http://www.epa.gov/cheers/"If you think of yourselves as helpless and ineffectual, it is certain that you will create a despotic government to be your master. The wise despot, therefore, maintains among his subjects a popular sense that they are helpless and ineffectual."Frank Herbert
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ABSTRACT: This article analyzes international law claims in human subject litigation, arguing that the failure of federal courts or Congress to oversee this kind of litigation by providing or recognizing a federal cause of action for research torts is an injustice. It is about two distinct and somewhat arcane areas of the law, international law and the law of human subjects research. Because they draw on different historical, social and conceptual frameworks, each has its own descriptive section in the article. In the first section, the author briefly describes international law and its place in the U.S. constitutional order. This section explains why international law claims are routinely rejected by the courts. In the second section, the author discusses the moral underpinnings of the research enterprise and explains how the values of science contradict the values of human rights and medicine.http://www.highbeam.com/doc/1G1-173187660.htmlRead more…
" An unacknowledged problem exists in the realm of human subject experimentation: criminal acts are being committed seemingly without consequence. The individuals escaping punishment are no ordinary individuals; rather, they are medical researchers whose exalted social status combined with the social benefits of their research appear to immunize them from punishment"http://www.thefreelibrary.com/When+human+experimentation+is+criminal.-a0199193804Read more…
"Jackson Signs Proposed Rule Amending Human Subjects Protections RuleOn January 18, 2011, U.S. Environmental Protection Agency (EPA) Administrator Lisa Jackson signed a proposed rule that would revise EPA's February 6, 2006, final rule concerning protections for subjects in human research. According to EPA, the proposed amendments would broaden the applicability of the rules to cover human testing with pesticides submitted to EPA under any regulatory statute it administers. The proposed amendments would also disallow participation in third-party pesticide studies by subjects who cannot consent for themselves. Finally, the proposed amendments would identify specific considerations to be addressed in EPA science and ethics reviews of proposed and completed human research with pesticides, drawn from the recommendations of the National Academy of Sciences (NAS). The pre-publication version of the proposed rule, which EPA expects to publish in early February 2011, is available online. Comments will be due 60 days after EPA publishes the proposed rule in the Federal Register."http://www.actagroup.com/updates/012711-fifra.htmRead more…
"Parens’ research examines how we use new technologies to shape ourselves and how emerging science shapes our self-understanding. He has written extensively on the topic, including co-editing the book Wrestling with Behavioral Genetics: Science, Ethics, and Public Conversation(Johns Hopkins University Press, 2006). He is co- principal investigator on a project funded by the National Institute of Mental Health, which explores the controversies surrounding the diagnosis and treatment of emotional and behavioral disturbances in children, and another, funded by The Dana Foundation, investigating the uses and misuses neuroimaging technologies."http://www.news-medical.net/news/20110224/Erik-Parens-to-speak-on-behavioral-genetics-at-Presidential-Commission-meeting.aspxRead more…
"LIM SC, I don´t know about Jay Sinn, is his profile also removed as memberfriend? (I was not connected to Jay Sinn, so I´m not able to see that) With Greg´s, his profile is still here at the site, but he´s not able to log-in and he is removed as friendmember on all profiles. I have mailed Soleilmavis about it (Greg has opened a new temporarly profile and message me to contact Soleil about what happened) I do not think this site is actually modereted by any at the time. Soleilmavis told me she had Monica Stoces(which is missing since last year-no one seems to know what have happened to her) and Goscott-and he has somehow dissapeared from this site. There is one more which I don´t remember the name of, but according to Soleilmavis he´s not well at all, so I think there is none here that is helping her at the moment. Surprisingly, there was 20 new members able to join yesterday somehow...It´s all so weird, I do not know what´s going on.//Annie "I can only edit the Blog feature of this site, I don't have access to member profiles. The comments section in the other blog profile shutdown is closed to outside comments. Obviously I'm still around.
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I was wondering about the intrest in synthetic biology and started looking into "transhumanism".The Wiki defintion:http://en.wikipedia.org/wiki/Transhumanism#Hubris_.28Playing_God_argument.29From the Hubris Argument:"As a practical matter, however, international protocols on human subject research may not present a legal obstacle to attempts by transhumanists and others to improve their offspring by germinal choice technology. According to legal scholar Kirsten Rabe Smolensky, existing laws would protect parents who choose to enhance their child's genome from future liability arising from adverse outcomes of the procedure.[96]"
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This is from Anon from areyoutargeted.com responding to the topic "psychiatric credentialing-conclusions""Quick outline of Psychologists’ Professional Obligations as weighed vs. use of deception in Hmn Subj Rsch:(excerpted & summarized from the grad paper I mentioned a few posts back)A crash course in Psych and the Law, 501 level, if you’re interested:Van Hoose’s Five (5) Fundamental Duties of the Psychologist(Swenson, L.C., Psychology & Law)1) Autonomy - duty to uphold the right to self-determination2) Beneficence - duty to benefit the client3) Nonmalficence - duty to not cause harm to or compromise the dignity of the client4) Justice - protection of civil rights5) Fidelity - duty to promote trust inherent in fiduciary relationships and in contract with the publicEthics summary: Use of deception in Human Subject Research must be weighed against the 5 duties.-The Duty to Autonomy necessarily intersects with Constitutional Rights, including Habeas Corpus-The Duty to Beneficence includes the extent to which the participant will benefit from the experience of inclusion in the research, or from application of its findings-The Duty to Justice weighs deception against civil rights, specifically as per any increasing levels of invasion of privacy-The Duty of Fidelity weighs deception against averse effects on the public trust, to include consideration of: the future ability to recruit participants and conduct research, the profession itself as a model of societal conduct, and the overall continuance of trust in the profession-The Duty of Nonmalficence weighs deception against actual physical and psychological harm to the subject. Breach of this duty is grounds for civil action through Tort suits for socially unreasonable conduct of individuals or institutions that in some way injures a private individual. Breach of duty occurs when the researcher’s conduct can be considered unreasonable and imprudent.––DHHS and Human Subjects Research in recent news:Even weighing what has been, by some accounts, the most lax Human Subjects Research set of guidelines issued to date (see Federal Register, Vol 68 No 119, June 20, 2003, Rules and Regs) “45 CFR Part 46 Waiver of the Applicability of Certain Provisions of DHHS Regulations for Protection of Human Research Subjects for DHHS Conducted or Supported Epidemiologic Research Involving Prisoners as Subjects”Here are the stipulations for allowing researchers to waive informed consent (for the vulnerable population of prisoners):The research at issue:-Involves no more than MINIMAL RISK and no more than MINIMAL INCONVENIENCE to the subjects-The prisoners are not a particular focus of the research-Reasonable provisions are made to protect the privacy of the subjects-Reasonable provisions are made to maintain the confidentiality of the data–-And now, a word from US:Now, knowing that the above 4 stipulations were made for waiving informed consent for prisoners in an epidemiological study, where does that leave us as HmnSubjs for the current “study?”Let’s turn the idea of deception on its head and frame the study as follows:Who would sign up for a study where the researchers told the prospective subjects that the following would occur:-You will be subject to physical and psychological torment-You may be subject to assault by instrumentation-You may be subject to humiliation and degradation-You will be subject to conditioning models designed to shape your behavior, and in the long term, reshape your belief systems, including but not limited to: your religious/spiritual beliefs, your political beliefs, your purchasing and consumer habits-Your relationships and social networks will be disrupted, you may be defamed or cast in intentionally misleading light regarding your character; relationships will be used as leverage to shape your person, including threats, intimidation, coercion-You will incur real-world medical expenses for which you will be responsible-You may incur real-world consequences by way of experimental inducements, to include, but not limited to institutionalization or incarceration-You may be required to relocate due to destitution or eviction due to perceived nuisance-You may not leave the study at any time-You will not know the identity of the researchers nor the source of the study funding-You will not be debriefed at any time about the true nature of the study––One final note, the fact that one potential outcome is this:or even become functionally mentally ill due to brainwashing.is just rich, and it shows what an epistemologically-closed loop this particular “study” was developed in.Because in essence, if they were at all concerned with, you know, intersections with other realities like the Rule of Law, they’d realize they’re admitting to grounds for civil Tort actions. If they represent that the effects of the study have made you mentally ill, and you’re not, that’s a False Light Tort.If they represent that the effects of the study have made you mentally ill, and you are, then that’s an Intentional Tort. Speaking of credentialing, either Tort is grounds for stripping someone’s license.The idea that they can continue to detain you indefinitely because you’re now damaged goods is exactly the same appalling, despicable logic being used at G.tmo. It’s sick. They’re saying, “lookie, we broke em, they’re really pissed off about what we did to them. That makes them a higher risk. Can we keep em?”––-This is no ordinary study. In fact, it is more of a CTP op in the disguise of a study.It could be said that DHHS (the ultimate governing body, if there even was one), was thoroughly deceived in green-lighting this project."http://areyoutargeted.com/2011/03/psychiatric-credentialing/#comment-BLLThhRead more…
"Macklin goes on to compare the Council's allegedly indistinct use of dignity with the more precise meaning that the concept is given in Genetics and Human Behavior: the Ethical Context, a report published in 2002 by the Nuffield Council on Bioethics in the United Kingdom.3 In that report, she notes, dignity refers to the idea that "one is a person whose actions, thoughts and concerns are worthy of intrinsic respect because they have been chosen, organized and guided in a way that makes sense from a distinctly individual point of view."4 Macklin's favorable comparison of this sense of dignity with the Council's "hopelessly vague" usage of the concept is but a Trojan horse for the central contention of her critique: namely, that dignity is a poor, blurred substitute for what she describes as the principle of medical ethics, respect for persons -or, as she later says, respect for autonomy. Even in the Nuffield report, she argues, the truth of the matter emerges: dignity adds nothing to, and in fact casts a confusing haze over, the ideas clearly conveyed by the principle of respect for autonomy.5"http://bioethics.georgetown.edu/pcbe/reports/human_dignity/chapter2.htmlRead more…
"Articles on ethics in social research can often seem somewhat thin on the ground. Although volumes are dedicated to a wide variety of issues within research practice, ethics tends to be overlooked. As sociologists we must consider whether there is a reason for this. Writing on ethics is surely one of the least popular activities a sociologist can do, for it is a subject which carries with it an aura of moralising which sits uncomfortably with us. After all, we all, as sociologists and researchers, have clear codes of what constitutes ethical behaviour to which we all adhere. This work is not, therefore, an attempt to describe a moral platform but to consider internet research through the lens of established paradigms in social research. Of late there has been a rising interest in what has come to be referred to as online ethnography. This is considered to be a variant of traditional ethnomethodological techniques, utilising a spectrum of observational and other qualitative methods to examine the ways in which meaning is constructed in online environments and gleans much of its’ analytical framework from derivations of conversation analysis. This work considers a slightly different variant of this in looking at the applicability to studies of internet interaction of the model of research pursued by Erving Goffman. In "Behaviour in Public Places"(1963) and "Relations in Public"(1971), Goffman’s concern is with social relationships, social order and public life. His analysis centres on the complex interrelation between the public and the private, which is used here to illuminate the nature and forms of online interaction. The questions which I hope to use Goffman’s analysis to open up for debate are those which are fundamental to the use of internet media in any research context. Can we justifiably regard online interactions on bulletin boards, mailing lists and in chat rooms as "public status" or do they constitute, as others may argue, a form of private conversation which is embedded within a public space? Or does the fact of private conversations occurring constitute these arenas as private spaces into which we, as researchers, are intruding? What are the natures and forms of intrusion online? And finally, and most significantly, what is the status of text in a world where the self is invested in the act of textual creation and no other? These issues clearly have considerable ramifications for a consideration of what would constitute a code of ethics in the age of information, and the establishment of such a code is particularly pressing now, when debate on the nature and forms of electronic life, in both on and off-line arenas, increasingly takes its cue from a moral panic over privacy and intrusion in the electronic age.
Firstly, however, we need to examine some contextual and theoretical considerations concerning the applicability of the use of a Goffmanian framework of analysis to online interaction. The key distinguishing feature of online behaviour is that it occurs solely through text and the exchange of text. Thus all "fronts", "settings" and "vehicles for conveying signs" of self can only be that which can be rendered in text. This is, some may argue, a fundamentally different proposition from the forms of embodied communication and intercorporeal self production (Crossley, 1995) which are investigated by Goffman. For Goffman, like Austin, language (speech) is performative, which is to say, it does something. "Each utterance presupposes, and contributes to the presuppositions of, a jointly inhabitable mental world"(Goffman, 1983). The truth of this assertion is nowhere more evident than in the case of online environments where utterances are all we can use to produce self. Yet in "Relations in Public"(1971), for example, language is given no privileged status as a means of constructing reality. Rather it is grouped along with embodied acts as a form of communicative or social ritual, one which reflexively affirms/creates social orders and relationships. However, the specific conception of speech as a form of ritual act is precisely what makes Goffman’s perspective so valuable to a consideration of internet communication, for this new arena raises serious questions about the nature of textual communication and issues a challenge to old ways of thinking.
We are accustomed, howsoever erroneously (Foucault, 1979) to regarding written language as the product of a single autonomous author. Writing is privileged within Western culture as a an expression of, rather than a constitution of, a single conscious self, as the views, opinions, subj ectivity and experiences of a person. Thus we tend to see text as autonomous, produced in isolation and on a conscious level, apart from the co-ordination of interaction. As Giddens contends, textual creation and interpretation "occurs without certain elements of the mutual knowledge involved in co-presence within a setting, and without the co-ordinated monitoring which co-present individuals carry on as part of on-going talk"(1990: p.100). In short then, texts are located within a realm defined by autonomy and distance from the mechanics of co-present production of self. It is this conception that textual interaction in electronic environments challenges and it does so through forcing a redefinition of key elements in the debate, namely those of co-presence, of means of co-ordination, and of producing self.
In online environments and in considerations of the nature of cyberspace the self is systematically problematised. It has become an article of faith amongst cyberspace commentators that the cyber-self is an infinitely flexible creation of an autonomous individual. From the concealment of aspects of stigmatised identity, through to the idea of gender as an elective, through postmodernist fantasies of the elimination of the embodied–self and a retreat into cyberspace, the recurring theme is that of agency in the production of online selves. In accounts of internet interaction the self is seen as an article of individual genius, the creation solely of its’ controller, a creature apart from and uninfluenced by the social world. This stance, then, depends upon a philosophical commitment to a transcendent self, a commitment which is outside the remit of an ethnographical perspective. In Goffman’s terms the self may be seen as a reflexive constitution by and of the social world. The cyber-self, no less than its embodied counterpart, may be argued to be produced through ritual, through the practices and relations which constitute the intersubjective fabric of the online social world. "Self.." argues Goffman " is not an entity half concealed behind events, but a changeable formula for managing oneself during them" (1974:573). It is "a code that makes sense out of…the individual’s activities and provides a basis for organizing them" (1971:366). If this is so in everyday life, it can b e no less true of interaction in online environments. It is simply that the signifying resources available to a particular construction and presentation of self are qualitatively different.
In "Relations in Public"(1971) Goffman delineates eight areas or territories of the self, which we attempt to control in interaction with others. These territories range from the body itself and its covering (the sheath), through personal possessions, to the information preserve, the set of facts about ourselves, biographical details and so forth which we reveal or conceal according to the situation. It is through control of these territories, the placement of individuals within the spaces of the territories in relation to the self, that we define our relations to others, the social world formed out of the nexus of these relations, and therefore ourselves. What emerges from the relocation of social interaction in the online environment is a curious tension between intensification of control over the territories of the self and its dissolution.
On the one hand we can attempt to present self in any terms of our choosing, and the lack of visible evidence and of biographical and situational information increases the chances of "passing", diminishing the potential for a contradiction of self claims. We gain control over our information preserves in this process. Yet even here one’s gain is another’s loss, as aspects of identity and self claims may be appropriated by others. Sherri Turkle (1986), for example, has spoken of the profound sense of unease she felt upon being confronted with an avatar which carried her name, her sense that an aspect of herself had been reified and removed from her.
Moreover, it can be argued that at the same time we lose control over the dissemination of the self we present. It is the conversational preserve, which Goffman defines as including "the right of a set of individuals once engaged in talk to have their circle protected from entrance and overhearing by others" (1971:64) which is most violated in this. The offence of overhearing is, in Goffman’s scheme, that of encroachment, of taking from an individual information not intended to be overheard, the penetration of a territory defined as own by the speaker, and the defilement of same through the process of intrusion.
Thus we have arranged the elements of Goffman’s analysis which are of most application to the analysis of online interaction, namely, the territories of self; the notion of self as an intersubjective construction of social interaction; public and private spaces as the production of interaction; ritual as social reality; and interaction as ritual. The question to which we now turn is that of the implications of this stance for the ethics of social research online. Our starting point must be a consideration of the status of online interaction, whether as public or private. Whether internet communicative forms are regarded as public or as private clearly has considerable ramifications for how we may treat the wealth of sociological "data" which scrolls before our eyes when we log on. Here it is the problematic notion of text which must be anatomised. If we treat online texts, whether on web sites, distributed through mailing lists, or as exchanges in chat rooms as texts per se, then it is evident that our only responsibilities as researchers lie in issues of intellectual property rights. However, if these texts are seen as interaction then the situation is somewhat different. In seeing textual production online as a form of self presentation and production which occurs within co-present, co-ordinated spaces of interaction we divorce the text from the subjectivity of the "author", aligning it instead as interactive ritual. Thus we are considering, not the expression of individual personalities, but the strategic means and forms of interaction within the media. The data is therefore, by implication, a product not of individual agency but of social ritual, in much the same manner as the pedestrian behaviour studied by Goffman may be considered to be separate from the will of any specific observed individual. In this instance, as Homan (1991:46) has argued, the data takes the form of an insight which is not peculiar to any specific individual and therefore does not attach a need to obtain informed consent from the participants.
If we are observing interactional ritual in this way, does it then follow that we may liken our research online to the position of a researcher who stands in a public place and observes the behaviour of those within it? Sociology has long accepted that public behaviours are a legitimate object for research insofar as such research focuses upon the forms of interaction, rather than the acts of any individual. Hence it is acceptable to observe the behaviour of people at town meetings, in churches, pedestrian behaviour in the streets and shops without needing to obtain informed consent. The reasons for this may partly reside in the difficulty of obtaining informed consent in these situations (a difficulty which is not applicable to online environments, where an obvious means to communicate the fact of a study in progress readily presents itself), but mainly centre on the lack of necessity for it. Thus behaviour in public places is a legitimate object of scrutiny for the social researcher, whereas that in private is not, unless consent is given.
As Homan(1991)has argued, whether a space is public or private is always relative to the definitions of those who occupy it and this is particularly true of internet communities, where ther e are/were no pre-existing cultural understandings of the nature of the media to appeal to or be guided by in defining the situation. Two areas may be considered to be revealing in this context, the views of the users as expressed through the conceptual and verbal apparatuses of the environments, and the actions of the internet community in the case of "lurkers".
The ways in which electronic environments are described constitute a conceptual apparatus, a tool for defining the spaces which we occupy when online. As Correll (1997)demonstrated in the case of the Lesbian cyber cafe upon which she conducted an ethnographic study, the creation and maintenance of physical spaces is one of the key rituals in the organisation of interaction. In a space where setting can only be evoked textually, patrons of the cyber cafe used descriptions of physical artefacts to organise the spaces of interaction, to define relationships to each other and create/ maintain a social order(Correll :1997). When we consider this in relation to spaces of online interaction in general it can be seen that descriptions of place serve to reflexively create arenas as public spaces. The diffusion of references to town halls, town pumps, villages and cafes all give ample testimony to an overriding definition of electronic forums as public status. These spaces, then, are communal spaces, and this implies that the interaction which occurs within them is also public and thus falls within the remit of an observational sociology which is directed at understanding behaviour in public spaces, whether on or off-line.
This idea is further supported by the actions of community participants with regard to "lurkers" or non-contributors. Lurking is at the very least tolerated in online environments and as Correll (1997) has pointed out lurkers often receive a warm welcome from communities when changing status to participant and acknowledging their previous activities. Such a tolerance may only be regarded as intelligible from the stance that internet interactions occur within a public arena and are therefore matters for public consumption. If we imagine an interaction in the offline world where one party listened attentively but did not make his/her presence known to the others taking part, we can only construe this in terms of "eavesdropping&quo t;. Th is definition would be contingent upon our understanding of the conversation as being private and therefore of the information being divulged as the preserve only of those co-present when it was revealed.
However, this comparison reveals a problem, namely the definition of co-presence as applied to internet communities. Although real time interactions over IRC must be exempted from this, since there is a temporal dimension involved in communication through that media, on mailing lists, web sites and to some extent in MUDs and on bulletin boards, the community to which we address ourselves is one that extends beyond the confines of the immediately co-present. Our posts to a BBS for example, may be replied to hours or days after we have produced them. We address ourselves in these environments, therefore, to the community as a whole, rather than those logged in at the time. A researcher may be a part of this community, whether as a researcher or simply in his/her own right as an individual and is thus amongst the addressed in receiving this ritual of interaction.
However, it must be acknowledged that, just as Goffman saw private spaces as existing within public ones, so in online spaces individuals can delineate a private arena into which others transgress at their peril. Through an exposition of the rituals and procedures by which public spaces may be transformed into private ones, Goffman demon strates that public and private are far from monolithic definitions to guide action. Rather all such definitions are locally produced and are therefore relative to the individual communal structures within which they are rendered meaningful. In online interaction it is acknowledged that some spaces are private to the specific community of users. Thus Mitra has referred to online ghettos and the gradual fracturing of internet life into multiple communities which share little in terms of a common culture or over-riding definition of themselves as "Netizens"(Hauben, 1997). Moreover, and to complicate matters, Correll’s research has indicated that the use of public forums for "private" engagements is widespread, with individuals often "breaking off" to form enclaves of private conversation. So how do we, as researchers, distinguish between interactions which are intended for the entire community of Net users, to which we might with validity be said to belong; those focused on a specific community, such as the ethnic groups studied by Mitra; and those directed at the maintenance of a private space between individuals? Only an engagement with the frameworks of meaning and relevance of the individual communities as revealed through the forms and rituals of interaction can yield an understanding of these issues.
The above discussion, I hope, exposes some of the complexities surround ing the issue of electronic interaction online and points the way to a discussion of the key issues which we, as researchers, face when venturing online. As always with matters of such complexity, any discussion inevitably raises more questions than it answers. Can the sociological researcher who participates in an electronic community leave his/her sociological subjectivity behind, or is, as Homan has suggested, the condition of being a sociologist an ontological state which cannot be divorced from the self of the researcher? How can we have an informed and informing ethnomethodological account of cyberspace when it itself is distinguished by a schism between identity and avatar? Who or what can give informed consent to participation in research in a world where an adult presenting avatar may be the construct of a child? Upon what terms and with reference to what means are online selves produced? Such questions have no easy answers, for the nature of online life is such that many of the main tenets of social life are, if not undermined at least rendered problematic and therefore available for reinterpretation. These are, however, issues which cry out for debate if sociology is to acquire a meaningful and informed understanding of social life online. If this article has sketched out a framework for the consideration of these issues and the resources available for their discussion, it has done what I intended."
Bibliography
Correll, Shelley (1995)"The Ethnography of an Electronic Bar: The Lesbian Cafe" pp. 270-298 in "The Journal of Contemporary Ethnography" Vol. 24 No. 3 October 1995
Crossley, Nick (1995)"Body techniques, agency and intercorporeality: On Goffman’s Relations in Public" Sociology Vol. 29 No. 1 February 1995 pp. 133-149
Foucault, Michel "What is an author?" 1979 Reproduced in Bocock, R and Thompson, K "Social and Cultural Forms of Modernity" Polity Press, Cambridge 1992
Giddens, Anthony(1990) "Social Theory and Modern Sociology" Polity, Cambridge
Goffman, Erving (1963) "Behaviour in Public Places: Notes on the Social Organization of Gatherings" Free Press/ MacMillan , New York
Goffman, Erving (1969)"The Presentation of Self in Everyday Life" Penguin, Harmondsworth
Goffman, Erving (1971)"Relations In Public: Microstudies of the Public Order" Penguin, Harmondsworth
Goffman, Erving (1974) "Frame Analysis: An Essay on the Organization of Experience" Harper and Row, New York.
Goffman, Erving (1983) "Felicity’s Condition" American Journal of Sociology 89 (1) pp.25-51
Hauben, M and Hauben, R (1997)"Netizens: On the History and Impact of Usene t and the Internet" 1997 IEEE Computer Society Press, California
Homan, Roger (1991) "The Ethics of Social Research" Longman, Essex
Jordan, Tim (1999)"Cyberpower: The Culture and Politics of Cyberspace and the Internet" Routledge, London
Mitra, Ananda (1997) "Virtual Commonality: Looking for India on the Internet" pp 55-79 in Jones, S (ed.) "Virtual Culture: Identity and Communication in Cybersociety", Sage, London 1997
Turkle, Sherry (1996) " Life on the Screen: Identity in the Age of Internet" Phoenix, London
Coercive persuasion comprises social influences capable of producing substantial changes in behavior, attitude, and ideology through the use of coercive tactics and persuasion, via interpersonal and group-based influences.The term was coined by Edgar Schein[1] in 1961 in relation to his study of Chinese POWs' indoctrination. According to Schein, the essence of coercive persuasion, ..., is to produce ideological and behavioral changes in a fully conscious, mentally intact individual. Schein notes that elements of coercive persuasion exist in many areas of human endeavor, such as college fraternities, established religion, social rehabilitation programmes, the armed forces, and other conventional institutions. Schein also suggests that the popular image of brainwashing as entailing "extensive self-delusion and excessive [mental] distortion [...] is a false one." [2]Martyn Carruthers has the following definition: "Coercive persuasion attempts to force people to change beliefs, ideas, attitudes, or behaviors using psychological pressure, undue influence, threats, anxiety, intimidation, and/or stress. (Coercive persuasion has been called mind control and brainwashing.) [3]Coercive persuasion is studied in managerial psychology, psychology of religion, epistemology, civil law (legal system), politics, diplomacy, and different aspects of sociology.In academic fields, the terms coercive persuasion, coercive psychological systems, or coercive influence are often used interchangeably.Coercive persuasion is used as a deterrent in diplomacy and warfare, using a threat to use force, or a credible threat to escalate a crisis or war to a more dangerous level.[4]Some scholars such as Michael Langone or J.K. Ungerleider use the term coercive persuasion in the same sense as brainwashing, thought reform or mind control[5] [6] and connect it to methods of cultic groups in acquiring and retaining members. This view is disputed by scholars such as James Gene[7] and Bette Nove Evans [8], among others, while the Society for the Scientific Study of Religion[9] stated in 1990 that there was not sufficient research to permit a consensus on the matter and that "one should not automatically equate the techniques involved in the process of physical coercion and control with those of nonphysical coercion and control". A similar statement was made by the American Psychological Association in 1987 when they rejected the report produced by the "APA taskforce on Deceptive and Indirect Techniques of Persuasion and Control" (DIMPAC)).[10], stating that "the brainwashing theory espoused lacks the scientific rigor and evenhanded critical approach necessary for APA imprimatur." See also Brainwashing controversies.In the cases of Molko vs. Holy Spirit Association and Wollersheim vs. Church of Scientology, coercive persuasion was connected by the plaintiffs to the legal concept of undue influence[11][12].Tactics mentioned in describing coercive persuasion can include everyday methods like hard sale tactics or environmental control like described by Robert Lifton.Many refrences at the end of the article:http://en.wikipedia.org/wiki/Coercive_persuasionRead more…
Drew Griffin reports for ‘Rogue Justice’ debuting Sunday, Jan. 30 at 8:00pm ET & PT on CNN/U.S.Greg Taylor spent 17 years behind bars for a murder he did not commit. Floyd Brown, also innocent, was forcibly detained in a mental institution for 14 years. The North Carolina State Bureau of Investigation (SBI) was at the center of both cases.CNN correspondent Drew Griffin investigates for Rogue Justice, airing on CNN/U.S on Sunday, Jan. 30 at 8:00p.m. ET and PT, and replaying on Saturday, Feb. 5, also at 8:00p.m. ET and PT.In Taylor’s case, the jury took just hours to sentence him to life, but the SBI had withheld evidence from the jury. In Brown’s case, an SBI agent claimed that he had written down verbatim a six-page confession that Brown had given him describing the murder in intricate detail. But Brown has the I.Q. of a seven-year-old and is incapable of even spelling his own name. Though there was no physical evidence linking Brown to the crime, the alleged confession resulted in his confinement to a mental institution.“The SBI lab became the prosecution’s lab, not the justice system’s lab,” says Christine Mumma, Taylor’s attorney.Taylor’s and Brown’s cases raised serious questions about the SBI and its investigations. An audit of the SBI’s crime lab ordered by the State Attorney General’s office in North Carolina found more than 200 cases between 1986 and 2003 in which blood test results were withheld from trial. In many cases, the evidence withheld would have helped the defense. In three of those cases, defendants were executed; four more remain on death row.Taylor’s and Brown’s terrifying experiences and personal struggles to achieve justice can be seen in separate features on www.cnn.com, as well as a video excerpt from the documentary. Digital material from Rogue Justice will be available beginning today, Thursday, Jan. 27.Rogue Justice was produced by Brian Rokus and Taryn Fixel. Kathy Slobogin is managing editor and Scott Matthews is the executive producer for CNN’s Special Investigations and Documentaries unit.CNN Worldwide, a division of Turner Broadcasting System, Inc., a Time Warner Company, is the most trusted source for news and information. Its reach extends to nine cable and satellite television networks; one private place-based network; two radio networks; wireless devices around the world; CNN Digital Network, the No. 1 network of news Web sites in the United States; CNN Newsource, the world’s most extensively-syndicated news service; and strategic international partnerships within both television and the digital media.-30-CONTACT: Jennifer Dargan 404.885.4638
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I've just deleted five posts from Firebird that seemed more like spam-vertisements. I would really perfer not to do this since I believe that the least control is best.
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KEY POINTS: CBPR lies at the nexus of two major underlying ethical concerns--respect for community autonomy and the fair allocation of limited public resources--which have generated considerable controversy about appropriate criteria for evaluating CBPR grant proposals. The complexity of evaluating CBPR proposals is compounded by the multiple purposes that it serves: (1) an ethical function of demonstrating respect for community autonomy; (2) a research method for eliciting ideas for interventions to improve population health; and (3) an intervention in itself, seeking to enhance the capacities of community participants.CONCLUSIONS: Growing use of CBPR raises two new ethical issues that deserve greater public attention: first, the problem of securing informed consent and demonstrating respect for community autonomy when the locus of research shifts from the individual to community level; and second, fair distribution of scarce public resources when practical constraints make the most rigorous research designs for assessing the effects of community interventions virtually impossible. In light of recent federal initiatives, it is critical to achieve a common understanding of appropriate ethical and scientific standards for assessing the merits of CBPR.http://www.ncbi.nlm.nih.gov/pubmed/20208234Read more…
Sandra Crouse Quinn, PhDThe author is with the Department of Behavioral and Community Health Sciences, Graduate School of Public Health at the University of Pittsburgh, Pittsburgh, Pa.Correspondence: Requests for reprints should be sent to Sandra Quinn, PhD, 230 Parran Hall, 130 Desoto St, Graduate School of Public Health, University of Pittsburgh, Pittsburgh, PA 15261 (e-mail: squinn{at}pitt.edu).ABSTRACTTOPABSTRACTINTRODUCTIONWHY DOES THE COMMUNITY...WHERE DO WE GO...A RESEARCH AGENDA ON...CABS AS A REFLECTION...ReferencesIncreasingly, researchers grapple with meaningful efforts to involve communities in research, recognizing that communities are distinct from individuals. We also struggle to ensure that individual participants in research are fully protected.Community advisory boards (CABs) offer an opportunity to adopt a relationships paradigm that enables researchers to anticipate and address the context in which communities understand risks and benefits, and individuals give consent.CABs provide a mechanism for community consultation that contributes to protecting communities and fostering meaningful research. Furthermore, CABs can help us to re-create informed consent as a process. It is critical that we conduct research to understand the role of CABs in the informed consent process.INTRODUCTIONTOPABSTRACTINTRODUCTIONWHY DOES THE COMMUNITY...WHERE DO WE GO...A RESEARCH AGENDA ON...CABS AS A REFLECTION...ReferencesTHE BELMONT REPORT: ETHICAL Guidelines for the Protection of Human Subjects1 was born from the fire of controversy over egregious abuses of human subjects. Its principles provide the foundation for contemporary regulations designed for the protection of human subjects. Since the mid-1980s, there has been an increased focus on the participation of groups and communities in the research process, originating from the demand of activists to be heard in the context of AIDS research. New voices and scientific challenges today are increasing the pressure to supplement or reinterpret the principles of the Belmont Report. Gostin2 expands the application of existing ethical principles of respect, beneficence, and justice to populations and communities, extending to groups the protections now reserved for individuals. Weijer3 asserts that a fourth ethical principle, "respect for communities," is necessary to address the increasing vulnerability of groups and to supplement the "atomistic" view of the person epitomized in the Belmont Report. Other scholars also agree that the Belmont framework focuses heavily on individuals. Today, research demands that we consider if not a new principle, a new interpretation of Belmont to account for the ways in which research affects communities.4,5The challenge to expand or revise the human subject protections of the Belmont Report by including community protection and participation as a principle builds on the assumption that new principles or regulations are necessary to include communities in a meaningful partnership. However, to date, the existence of the Belmont principles and regulations governing human subjects research has not fully prevented research abuses nor has it contributed to positive partnerships with communities. Therefore, the solution is not to change principles or regulations alone when in fact a new approach that integrates the relationships paradigm that was advocated by King et al.6 is necessary. Community advisory boards (CABs) become one meaningful and feasible way to operationalize new protections of communities.WHY DOES THE COMMUNITY NEED TO BE INCLUDED?TOPABSTRACTINTRODUCTIONWHY DOES THE COMMUNITY...WHERE DO WE GO...A RESEARCH AGENDA ON...CABS AS A REFLECTION...ReferencesAdvances in science, technology, and biomedical research push the boundaries of our Belmont principles, stimulating the need for communities to be involved in the informed consent process. Emergency medical research involves the application of experimental procedures or medications to unconscious research subjects with closed head trauma or other life-threatening injuries when their condition demands immediate action, standard procedures are not thought to be effective in that case, and the family is unavailable to provide consent. Changes in Food and Drug Administration regulations allow waivers of informed consent in such lifethreatening emergencies.7 The rights of unconscious subjects are thought to be accorded a degree of protection through the mechanism of "community consultation" that requires prior consultation (by investigators/the institutional review board) with community representatives, as well as public disclosure to the affected community before and after the research.Burgeoning genetic research fuels public fears, particularly in communities or social groups that have experienced the brunt of social discrimination in the past. As a result, the concept of potential harm to others emerged from the National Bioethics Advisory Commission’s report Research Involving Human Biological Materials: Ethical Issues and Policy Guidance.8 In recommendation 17, the advisory commission explicitly recognizes that the risk of group harm is distinct from the risk of individual harm. Therefore, the commission calls upon researchers to anticipate and disclose such risks and to consult with community representatives if they believe such risks to be possible. In 2000, The National Institute of General Medical Sciences convened the First Community Consultation on the Responsible Collection and Use of Samples for Genetic Research.9 With a growing concern about the potential for discrimination, stigmatization, and breaches of privacy in genetic research, participants raised key questions about how community may be defined in research, what risks and benefits exist for community members in research, and how community members can or should participate in the process of research. Participants echoed the commission’s stance that there are ethical issues related to research with communities that are distinctly different from the ethical issues related to research with individuals. Most importantly, the meeting resulted in 10 recommendations for genetic research:1. Define community in appropriate and meaningful ways.2. Understand the potential benefits and risks of research for communities and community members.3. Obtain broad community input for all phases of research.4. Respect communities as full partners in research.5. Resolve all issues pertaining to tissue samples.6. Establish appropriate review mechanisms and procedures.7. Facilitate the return of benefits to communities.8. Foster education and training in community-based research.9. Ensure dissemination of accurate information to the media and the public.10. Provide sufficient funds for research and encourage community–researcher partnerships.9(p2–3)A number of difficult questions remain with respect to community consultation, including who is entitled to speak for a community, who decides the research questions, and, finally, whether a community should have a role in approving a protocol.Minority communities raise significant concerns about genetics research. In early results from the Genome Technology and Reproduction: Values and Public Policy project at the University of Michigan,10 researchers described Latino and African American participants as particularly concerned that communities of color would bear the burdens of genetic research without receiving potential benefits of that research. Participants argued for a role for communities in every phase of research, whether through partnership, consultation, or a CAB. This is particularly critical in minority communities where cultural and historical context are particularly relevant, and some form of consultation in the process of informed consent can help ensure that researchers gain an understanding of the social context in which community members assess the risks and benefits of research.11 The Hispanic/Latino Genetics Consultation Network is a collaborative effort between Redes En Accion, the Baylor College of Medicine, and the National Institutes of Health to "create a forum for Latinos to identify, prioritize and disseminate information on genetics."12 Their June 2003 forum brought 75 key opinion leaders together with federal agencies to prioritize research issues from the perspective of the Latino community, thereby shaping the National Institutes of Health’s policies, research, and education.Calls for changes in the interaction between researcher and community also emerge from community voices, often stimulated by mistrust and fatigue from being the "subject" of research while rarely benefiting from the fruits of research. Kone et al.13 conducted interviews with community residents in several Seattle neighborhoods in a study of community–researcher relationships. Key lessons from that study include the following: (1) researchers must have a clear understanding of what community means to those involved and the respective communities themselves; (2) community members from diverse backgrounds must be involved in the research process; (3) community members want to have an active role, including being trained to conduct research; (4) more researchers from racial and ethnic minority populations are needed; and (5) mechanisms to ensure sharing of power and resources are critical. The authors assert that establishing a CAB and developing a community-based participatory research (CBPR) process are potential means to strengthen researcher–community collaboration.13Finally, a disturbing linguistic dynamic has emerged in research discourse, and this potentially undermines our existing mechanisms for the protection of human subjects. It is increasingly common to hear researchers describe informed consent as a task to be done, speaking of the need "to consent" the subject. This subtle shift in language exposes a dangerous fault line, raising the question of whether the focus is on informed consent as a product, such as a signed document, or informed consent as a process. "To consent" the subject raises questions about the dynamic of power between researcher and potential subject and challenges our existing principles of autonomy and justice. One key element of informed consent is voluntariness or the absence of a significant controlling influence. However, "consenting someone" implies that voluntariness may be more easily compromised. The extent to which the pressure on researchers to enroll minority participants may interact with this dynamic and contribute to potential breaches of informed consent is unknown, yet troublesome. The evolving language of research requires further vigilance to ensure that individual informed consent is not compromised, opening the door for a role of the community to assist in this process.WHERE DO WE GO FROM HERE?TOPABSTRACTINTRODUCTIONWHY DOES THE COMMUNITY...WHERE DO WE GO...A RESEARCH AGENDA ON...CABS AS A REFLECTION...ReferencesAlthough the drive to involve communities in the process of research stems from a multitude of factors, investigators accomplish this through a variety of means. Inclusion of new principles, elucidation of community consultation and community consent mechanisms, CBPR, inclusion of community members on institutional review boards, and CABs are possible means to include communities in research. Each model has specific roles, benefits, and drawbacks (a full elucidation of those is beyond the scope of this article).Weijer and Emanual14 contend that the primary rationale for involving communities is that the community has a right to respect and protection, based on a partnership with the researcher. Therefore, they suggest that several protections can be afforded communities: (1) consultation in protocol development, (2) information disclosure and informed consent at the community level, (3) involvement in all phases of the research, (4) access to data and samples that again would require community consent, and (5) involvement in dissemination and publication of results.They argue that whether the potential protection takes the form of community consultation or community consent will vary depending on the characteristics of the community.14 For community consultation to occur, the community must have specific characteristics such as a healthrelated common culture, a group that is representative of the community, some mechanism for collective priority setting, and a communication network. If consultation requires a face-to-face meeting, the community must be geographically localized. Such community consultation would consist of involving community representatives in the planning of the study, informing the community as a whole at the start of the study and throughout its course, consulting with the community on the use of the data, and providing a report of the data to the community.14 However, they recommend that for community consent to be possible, the community also must have a legitimate political authority that can make binding decisions.14 This approach to community consent is an added protection that still preserves individual autonomy. One example of this model is the ability of some tribal nations with governing bodies to determine tribal participation in research endeavors.CBPR is a growing approach to the development of an equal partnership between the researcher and the community. Israel et al. write that "community based research is a collaborative approach to research that equitably involves community members, organizational representatives, and researchers in all aspects of the research process."15(p177) There are multiple rationales for CBPR, including improving the quality and validity of research, bridging cultural gaps between researchers and communities, increasing trust between researchers and communities, involving marginalized communities, and enhancing the relevance and usefulness of the data.13,15 Additionally, developing research that is meaningful to the community by addressing its expressed needs is one rationale and benefit of CBPR; certainly, this benefit addresses a common complaint of community members whose perception is that communities rarely benefit directly from research. Explicitly addressing informed consent issues is not generally a rationale for the use of CBPR. Although CBPR lends itself well to some areas of research, it is not applicable to all types of research conducted by public health and other health professionals. Consequently, CABs provide another strategy for protection of communities in research.According to Strauss et al.,16 CABs consist of community members with a common identity, history, symbolism, language, and culture. CABs can play various roles. They can (1) act as a liaison between researchers and community, (2) represent community concerns and culture to researchers, (3) assist in the development of study materials, (4) advocate for the rights of minority research study subjects, and (5) consult with potential study participants to provide recommendations about research study enrollment. Although CABs can certainly help to shape the research questions in ways that may be more salient to the community, their role is not necessarily the joint determination of research questions that is necessary with CBPR. CABs can also play a role in the dissemination of results from a study.There are multiple models for CABs. One model has been the establishment of a CAB for a specific study; much of the literature existing on CABs focuses on this model. However, another model is the establishment of an institutional CAB that may examine a whole array of research studies. The CAB at the Urban Research Center, Center for Urban Epidemiological Studies in Harlem exists to serve the center in its broader sense, addressing an array of health issues.17–19 At the Center for Minority Health, Graduate School of Public Health at the University of Pittsburgh, the community research advisory board is a freestanding advisory board that grapples with studies from investigators across the multiple schools of the health sciences including medicine and public health. In Europe, there are multiple models for CABs.Strauss et al.16 view CABs as a potential protection against breaches of individual informed consent as well as serving to improve research when the CAB provides for ongoing dialogue between the researchers and the community. They argued that CABs can play a valid role in the threshold, informational, and consent elements of the informed consent process in such a way as to help ensure informed consent by the individual. A review of existing literature would suggest that CABs most commonly contribute to the informational elements of the informed consent process by seeking and evaluating information from investigators on risks and benefits of participation, disseminating it to the community, and making concrete suggestions on informed consent forms.17,20,21 The CAB at the Urban Research Center in Harlem includes this statement in its operating principles:All Urban Research Center research projects will meet current ethical standards and will fully respect the rights of all participants in a culturally sensitive manner, including the rights to be aware of risks and benefits, to give informed consent, and to have the option to withdraw from research at any time without penalty to the participant.17(p532)In order for CABs to prevent ethical lapses and to maintain a role in informed consent, they will require appropriate education about human subjects’ protections. For example, the community research advisory board at the University of Pittsburgh holds educational sessions on the principles of informed consent, research ethics, the institutional review board process, and perceptions of African Americans about participation in research.CABs may be one viable means of meeting the recommendation from the Institute of Medicine’s report on responsible research, which calls for human subject participant protection programs to "foster communication with the general public, research participants and research staff to assure that the protection process is open and accessible to all interested parties."22(p64) In fact, the Institute of Medicine considers "transparency—to ensure open communication and interaction with the local community, research participants, investigators, and other stakeholders in the research enterprise" to be a necessary condition for a sound protection program.22(p52) The Institute of Medicine panel goes further to call for adequate protections programs to include access to a "responsible, knowledge, neutral third party."22(p65) The role of that party—to allow for communication, open consideration of concerns, and addressing problem issues—is certainly congruent with that of a CAB.A RESEARCH AGENDA ON CABS AND INFORMED CONSENTTOPABSTRACTINTRODUCTIONWHY DOES THE COMMUNITY...WHERE DO WE GO...A RESEARCH AGENDA ON...CABS AS A REFLECTION...ReferencesA substantial research agenda is necessary to understand the potential roles and effectiveness of CABs in the informed consent process. Critical questions include the following:1. To what extent do CABs have some interaction with institutional review boards? What is the interaction?2. To what extent have CABs contributed to the review or development of informed consent forms and processes? What education or training was necessary in order for them to address these tasks?3. To what extent may CABs play a role in other elements of informed consent, including the threshold elements of competence and voluntariness and the actual consent elements of decision to act and authorization?4. To what extent have CABs fulfilled the obligation for community consultation in emergency research that requires a waiver of informed consent?5. To what extent have CABs been a resource to study participants when questions about ethical conduct of research arise?6. Have CABs experienced the need to address potential lapses in protection of human subjects? What were the circumstances and how did they respond?7. To what extent do CABS help facilitate the evolution of communities that have been historically vulnerable in the research endeavor to communities empowered to participate fully in the informed consent process?There has been little evaluation of the functioning of CABs in the literature. To fully realize their potential contribution to the process of informed consent, we must understand more about CABs in general. Research on their functions, the roles of members, barriers and challenges, and interactions with researchers and community is essential.Although the potential for CABs is great, their success lies in the ability of the researchers and CABs to form a true partnership, enabling their different voices to be heard equally. To do so requires that investigators be willing to develop open communication and to share power and decisionmaking with CAB members. It challenges investigators to incorporate understanding of cultural and social context into their research process. Conversely, for a CAB to be successful, CAB members must represent their community honestly, and they must willingly tackle the need to understand often-complex research studies and protocols. Simply creating a CAB without being truly open to working together may, in fact, further harm relationships with the community, which may rightly perceive the CAB as "window dressing."CABS AS A REFLECTION OF A PARADIGM SHIFTTOPABSTRACTINTRODUCTIONWHY DOES THE COMMUNITY...WHERE DO WE GO...A RESEARCH AGENDA ON...CABS AS A REFLECTION...ReferencesUltimately, CABs may constitute the feasible means of ensuring a role for communities in research and informed consent, enabling researchers to incorporate the relationships paradigm that King et al.6 raise as an alternative to a focus on the principalist paradigm from a stricter interpretation of the Belmont Report.1 They argue that researchers frequently conducted research from what they describe as the principalist paradigm that focuses on "balancing principles of autonomy, beneficence, justice, informed consent and confidentiality; assumes ethical universalism (not moral relativism)—truth (not stories); and maintains an atomistic focus—small frame, centered on individuals."6(p15) They go on to state that "the moral principles held to govern research with human subjects remain current and meaningful but make sense only in context. Thus, the ethics of human subjects research may be universal but is at the same time deeply particularized, so that what autonomy or informed consent or confidentiality or even benefit and harm means depends on the circumstances."23(p213)King et al.6,23 challenge us to expand beyond the synchronic (slice-of-time) "principalist paradigm" of Belmont evident in our system of federal regulations to include a "relationships paradigm." Such a shift in approach would account for both the interactions between subjects and their communities and subject–communities with researchers. Their call for an integration of the principalist paradigm with a relationships paradigm is consistent with the functions and potential roles of CABs. The relationships paradigm recognizes the breadth and depth of relevant relationships between individuals and groups in a community; incorporates the relevant contexts including culture, gender, race/ethnicity, history, community, place, and others that affects research; acknowledges crosscutting issues and allows wider frames of reference; and adopts what they term as a more "narrative focus."6The relationships paradigm calls for a broader understanding of time beyond that of a specific research study and recognizes that issues of importance in the context of broader community life, occurring both before and after a specific research study, necessitate some continuity of relationship between investigator and community.6,23 Not infrequently, investigators may enter a community without full comprehension of relevant issues and previous research demands and depart when their grant draws to a close. Adopting a relationships paradigm requires consideration of a longer window of time in the community’s life and the investigator’s roles within the community’s particular context. Beyond the issue of informed consent, CABs provide an avenue to raise questions of particular salience to the community and to share the results of the research with the community, a frequent source of anger for communities that lament the failure of investigators to disseminate their results.Adopting a new principle of "respect for communities" to expand our existing Belmont principles provides no guarantee that we will conduct research in a manner that fully respects communities. However, CABs offer one opportunity to adopt a relationships paradigm that enables researchers to anticipate and address the context in which communities understand risks and benefits and individuals give consent. CABs provide the mechanism for community consultation that contributes to protecting communities and fostering meaningful research. Furthermore, CABs can enable us to fully interpret the principles of autonomy, beneficence, and justice and re-create informed consent as a process. To reap these benefits from CABs, investigators must truly believe them to be of significant value in the research process and create meaningful partnerships with communities. Ultimately, the health of our communities will be the beneficiaries.AcknowledgmentsThe author was supported in part through a National Institutes of Health grant (1P01 MD0020701) for a Center in Excellence in Partnerships for Community Outreach, Research on Health Disparities and Training.FootnotesPeer ReviewedAccepted for publication November 25, 2003.ReferencesTOPABSTRACTINTRODUCTIONWHY DOES THE COMMUNITY...WHERE DO WE GO...A RESEARCH AGENDA ON...CABS AS A REFLECTION...References1. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects. Washington, DC: Department of Health, Education and Welfare; 1979.2. Gostin L. Ethical principles for the conduct of human subject research: population-based research and ethics. Law Med Health Care.1991;19:191–201.[Medline]3. Weijer C. Protecting communities in research: Philosophical and pragmatic challenges. Camb Q Healthc Ethics.1999;8:501–513.[Web of Science][Medline]4. Levine R. Ethics and Regulation of Clinical Research. Baltimore, Md: Urban & Schwarzenberg; 1986.5. McCarthy C. North American perspective. In: Bankowshi Z, Howard-Jones N, eds. Human Experimentation and Medical Ethics: Proceedings of the XV CIOMS Round Table Conference. Geneva, Switzerland: Council for International Organizations of Medical Sciences; 1993: 208–211.6. King N, Henderson G, Stein J. Introduction—relationships in research: a new paradigm. In: King N, Henderson G, Stein J, eds. Beyond Regulations: Ethics in Human Subjects Research. Chapel Hill, NC: University of North Carolina Press; 1999:1–17.7. US Department of Health and Human Services, Food and Drug Administration. Guidance for institutional review boards, clinical investigators and sponsors: Exceptions from informed consent requirements for emergency research. Available at: http://www.fda.gov/ora/compliance_ref/bimo/emrfinal.pdf. Accessed February 16, 2004.8. National Bioethics Advisory Commission. Research involving human biological materials: ethical issues and policy guidance: report and recommendations of the National Bioethics Advisory Commission. Available at: http://www.georgetown.edu/research/nrcbl/nbac/hbm.pdf. Accessed February 16, 2004.9. National Institute of General Medical Sciences. Report of the first community consultation on the responsible collections and use of samples for genetic research. 2000. Available at: http//www.nigms.nih.gov/news/reports/community_consultation.html/communities. Accessed June 23, 2003.10. Schulz A, Foster S, Caldwell C, Modell S, Singer E. 1999/2000 focus group content report: communities of color and genetics public policy project. 2000. Available at: http://www.sph.umich.edu/genpolicy/current/reports.html. Accessed April 15, 2001.11. Sharp R, Foster M. Involving study populations in the review of genetic research. J Law Med Ethics.2000;28:41–51.[Web of Science][Medline]12. The National Hispanic/Latino Cancer Network. Redes en accion, news: nationwide Latino genetics conference held June 22–24, 2003. Available at: http://www.redesenaccion.org/news. Accessed September 17, 2003.13. Kone A, Sullivan M, Senturia K, Chrisman N, Ciske S, Krieger J. Improving collaboration between researchers and communities. Public Health Rep.2000;115:243–248.[Web of Science][Medline]14. Weijer C, Emanuel E. Protecting communities in biomedical research. Science.2000;289:1142–1144.[Free Full Text]15. Israel B, Schulz A, Parker E, Becker A. Review of community based research: assessing partnership approaches to improve public health. Ann Rev Public Health.1998;19:173–202.[Web of Science][Medline]16. Strauss R, Sengupta S, Quinn S, et al. The role of community advisory boards: involving communities in the informed consent process. Am J Public Health.2001;91:1938–1943.[Abstract/Free Full Text]17. Galea S, Factor S, Bonner S, et al. Collaboration among community members, local health service providers, and researchers in an urban research center in Harlem, New York. Public Health Rep.2001;116:530–539.[Web of Science][Medline]18. Galea S, Factor S, Palermo A, Aaron D, Canales E, Vlahov D. Access to resources for substance users in Harlem, New York City: service provider and client perspectives. Health Educ Behav.2002;29:296–311.[Abstract/Free Full Text]19. Factor S, Galea S, De Duenas Geli L, et al. Development of a "survival guide" for substance users in Harlem, New York City. Health Educ Behav.2002;29:312–325.[Abstract/Free Full Text]20. HIV Prevention Trials Network (HPTN). HIV prevention trials network community advisory boards (CABs) guidelines. Available at: http://www.hptn.org/community_program/cab_guidelines.htm. Accessed June 13, 2003.21. Morin S. Enhancing community participation in HIV prevention research. Available at: http://ari.ucsf.edu/pdf/Posters/barcelona/morin.pdf Accessed June 26, 2003.22. Federman D, Hanna K, Rodriguez L, eds. Responsible Research: A Systems Approach to Protecting Research Participants. Washington, DC: Institute of Medicine, National Academies Press; 2003.23. King N, Henderson, G, Stein J. Conclusion. regulations and relationships: toward a new synthesis. In: King N, Henderson G, Stein J, eds. Beyond Regulations: Ethics in Human Subjects Research. Chapel Hill, NC: University of North Carolina Press; 1999:213–224.
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