Human Genome Diversity Project

Greely, Henry T.

doi:10.1002/0471250597.mur095

Cited by 3 publications

(2 citation statements)

References 33 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…I date them to the December 1995 Journal of the American Medical Association article by Ellen Wright Clayton on the use of stored tissue samples (Clayton 1995); I have written about them myself many times (North American Regional Committee 1997 ;Greely 1998;1999;2000;2001;2007;. Others, some cited by Rothstein, have also taken on one or more of these problems.…”

Section: The American Journal Of Bioethicsmentioning

confidence: 99%

To the Barricades!

Greely

2010

The American Journal of Bioethics

Self Cite

View full text Add to dashboard Cite

Mark Rothstein (2010) argues that current American regulations concerning deidentified research data and biological samples, as well as common practice by researchers and researcher overseers, are unethical, as well as quite possibly against the best long-term interests of biomedical research. He's right. Rothstein urges that, as a consequence, A detailed process of public engagement, pilot projects, and careful study is needed before any type of regulatory coverage should be extended to deidentified health information and biological specimens. In the interim, responsible researchers should consider whether, in the context of their particular research, additional measures are needed to protect deidentified health information and biological specimens and demonstrate respect for the individuals from whom the information and specimens were obtained. (3) He's wrong. What we need is not a "detailed process" but a revolt, if not a revolution.The problems Rothstein points out in the research use of deidentified information and biological samples are real, but they are deeper, broader, and more serious than he argues in this paper.He identifies six risks and one ethical problem. The risks are 1. The unregulated process of deidentifying data and materials 2. The problem of possible reidentification 3. Group harms 4. Objectionable uses 5. Commercial exploitation 6. Undermining trust (hence participation in and support for research).The problem is that our treatment of deidentified information and samples completely ignores research participants' autonomy-their rights to decide whether they want to take part in any given research project.The article discusses these issues when they arise from research with deidentified information and samples. And, apparently, although this is not entirely clear from the article, Rothstein is focusing on situations where data and samples collected for non-research uses (presumably clinical) are first used for research only after they are deidentified. But this field of vision is too narrow. The issues he raises are true not only with newly deidentified data but also with the more common situation where data collected in some kind of identifiable form for one specific research project are then deidentified and used, or made available for use, in other projects with other goals. Furthermore, all of the risks except the first (the process of deidentification) also apply to "anonymous" data and samples, those collected without any personal identifying information.Although the research system's treatment of deidentified or anonymous research information and samples is egregious, this is not the only major problem with how we currently regulate human subjects research. Researchers need to pay more attention in many ways to the interests and wishes of the people who donate the information and samples essential for the researchers' work (and careers).Researchers need to use the information and samples only for purposes to which the research partici-

show abstract

Section: The American Journal Of Bioethicsmentioning

confidence: 99%

To the Barricades!

Greely

2010

The American Journal of Bioethics

Self Cite

View full text Add to dashboard Cite

show abstract

“…Public engagement in biobanks is manifold, ranging from information dissemination on biobank websites and town-hall-style panels and workshops, to community representatives serving on biobank boards and, in some cases, full power sharing. While these engagement modalities are an improvement from the relic models of top-down, expert-driven discretionary governance [ 12 ] that led to democratic deficits, sustained public criticism (for example, the Human Genome Diversity Project [ 13 ], UmanGenomics in Sweden [ 14 ], and the proposed biobank project in the Kingdom of Tonga [ 15 ]), or legislative failures (for example, the Health Sector Database Act in Iceland [ 16 ]), they too suffer several shortcomings.…”

mentioning

confidence: 99%

Power to the people: a wiki-governance model for biobanks

Joly

Knoppers

2012

Genome Biology

View full text Add to dashboard Cite

show abstract

Informed Consent and Other Ethical Issues in Human Population Genetics

Greely

2001

Annu. Rev. Genet.

View full text Add to dashboard Cite

Human population genetics has entered a new era of public interest, of controversy, and of ethical problems. Population genetics raises novel ethical problems because both the individuals and the populations being studied are, in effect, "subjects" of the research. Those populations are collectively subject to possible benefits and harms from the research and have interests, somewhat different from those of the individuals, that must be considered from both ethical and practical standpoints. The chapter first describes the new setting for research in human population genetics. It then examines the most controversial ethical issue in population genetics-whether researchers must obtain the informed consent of both the individual subjects and the group as a collectivity. Other vexing issues, including special problems caused by researchers' commercial interests, confidentiality, control over research uses and materials, and return of information to the population are also considered.

show abstract

Human Genome Diversity Project

Cited by 3 publications

References 33 publications

To the Barricades!

To the Barricades!

Power to the people: a wiki-governance model for biobanks

Informed Consent and Other Ethical Issues in Human Population Genetics

Contact Info

Product

Resources

About