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Community confidentiality, consent, and the individual research process: Implications for demographic research

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Abstract

Institutional review boards are increasingly meticulous about informed consent and risks and benefits to study participants. Concurrently, heated debate in a number of fields has advanced the notion of community risk and benefit. When research is conducted in communities, and the results may “do harm to” communities socially, economically, or medically, should informed and voluntary consent be obtained from communities as well? We argue that for demographers – by definition interested at the phenomena at the population level – concern for individuals as a part of communities is critical to the research process. Questions of community consent, confidentiality, and participation will be pushed to the fore as demography delves into new areas and methods of investigation. This paper provides a brief overview of the historical development of ethics in human subjects research and the subsequent ties to community-level concerns. Drawing on current examples from a variety of settings, we explore definitions of community, the scope and viability of community participation in research, and the implications of these for demographic enquiry. We find that in contrast to substantive debates, little attention has been given to ethical issues in the demographic research process. Research accountability to communities, including the documentation of community risks and benefits, and community representation and consultation in the research process are recommended.

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References

  • Academy of Criminal Justice Sciences. (2002). Available from http://www.acjs.org/PDF%20Files/ethics.pdf>. Accessed September 2002.

  • D.G. Altman (1995) ArticleTitleSustaining intervention in community systems On the relationship between researchers and communities Health Psychology 14 IssueID4 526–536

    Google Scholar 

  • American Anthropological Association. (2002). Available from <http://www.aaanet.org/committees/ethics/ethcode.htm>. Accessed September 2002.

  • American Association for Public Opinion Research. (2002). Available from <http://www.aapor.org/ethics/code.html>. Accessed September 2002.

  • American Psychological Association. (2002). Available from <http://www.apa.org/ethics/code.html#6.10>. Accessed September 2002.

  • American Sociological Association. (2002). Available from <http://www.asanet.org/ethics.htm>. Accessed September 2002.

  • American Statistical Association. (2002). Available from <http://www.amstat.org/profession/ethicalstatistics.html>. Accessed September 2002

  • Aral, S.O. & Peterman, T.A. (1998). Do we know the effectiveness of behavioural interventions?The Lancet (suppl III): 33-36.

  • Associated Press (Saturn of Seattle). (1999). Indians say U.S. failed to help in fight against ’Pima Plague’, Saturn of Seattle, Monday, November 1. Available from <http://seattletimes.nwsource.com/news/nation-world/html98/diab_19991101.html>.

  • Association of Social Anthropologists of the Commonwealth. Available from <http://www.asa. anthropology.ac.uk/ethics2.html. Accessed September 2002.

  • S.R. Benatar (2002) ArticleTitleReflections and recommendations on research ethics in developing countries Social Science and Medicine 54 1131–1141

    Google Scholar 

  • A.F. Benjamin (1999) Contract and covenant in Curacao: Reciprocal relationships in scholarly research, N.M.P. King G.E. Henderson J Stein (Eds) Beyond regulations: Ethics in human subjects research University of North Carolina Press Chapel Hill and London

    Google Scholar 

  • A. Blanc (2001) ArticleTitleThe effect of power in sexual relationships on sexual and reproductive health: An examination of the evidence Studies in Family Planning 32 IssueID3 189–213

    Google Scholar 

  • L. Blanchard (1999) Community assessment and perceptions: Preparation for HIV vaccine efficacy trials N.M.P King G.E Henderson J. Stein (Eds) Beyond regulations: Ethics in human subjects research University of North Carolina Press. Chapel Hill and London

    Google Scholar 

  • J.T. Boerma E. Holt R. Black (2001) ArticleTitleMeasurement of biomarkers in surveys in developing countries: Opportunities and problems Population and Development Review 27 IssueID2 303–314

    Google Scholar 

  • M.B. Bowekaty D.S. Davis (2003) ArticleTitleCultural issues in genetic research with American Indian and Alaskan Native people IRB: Ethics & Human Research 25 IssueID4 12–15

    Google Scholar 

  • A.M. Brandt (1978) ArticleTitleRacism and research: The case of the Tuskegee syphilis study Hastings Center Report 8 IssueID6 21–29

    Google Scholar 

  • British Association for Applied Linguistics. (2002). Available from <http://www.baal.org.uk/ethicsug.htm>. Accessed September 2002.

  • British Educational Research Association. (2002). Available from <http://www.bera.ac.uk/guidelines.html>. Accessed September 2002.

  • British Society of Criminology. (2002). Available from <http://www.lboro.ac.uk/departments/ss/bsc/council/CODEETH.HTM>. Accessed September 2002.

  • British Sociological Association. (2002). Available from <http://www.britsoc.org.uk/about/ethic.htm>. Accessed September 2002.

  • W.J. Burman R.R. Reves D.L. Cohn R.T. Schooley (2001) ArticleTitleBreaking the camel’s back: Multicenter clinical trials and local institutional review boards Annals of Internal Medicine 134 IssueID2 152–157

    Google Scholar 

  • Butalia, U. (2000). Sound and fury in the hills, ExpressIndia. May 12, 2000. Available from <www.expressindia.com/ie/daily/20000512/ied12051.html>. Accessed September 2002.

  • A. Caplan (Eds) (1992) When medicine went mad: Bioethic and the holocaust. Humana Press. Totowa, NJ

    Google Scholar 

  • Cavalli-Sforza, L. (1993). Prepared statement, in Human genome diversity project: Hearing before the Committee on Governmental Affairs, United States Senate, April 26, 1993.Washington D.C.: U.S. Government Printing Office.

  • N.A. Christakis (1992) ArticleTitleEthics are local: Engaging cross-cultural variation in the ethics for clinical research Social Science and Medicine 35 IssueID9 1079–1091

    Google Scholar 

  • A. Cornwall R. Jewkes (1995) ArticleTitleWhat is participatory research? Social Science and Medicine 41 IssueID12 1666–1676

    Google Scholar 

  • Council for International Organizations of Medical Sciences (CIOMS). (1993). International ethical guidelines for biomedical research involving human subjects. Geneva: CIOMS in collaboration with the World Health Organization.

  • B.M. Dickens (1991) ArticleTitleIssues in preparing ethical guidelines for epidemiological studies Law, Medicine & Health Care 19 IssueID3-4 175–183

    Google Scholar 

  • M. Dodson R. Williamson (1999) ArticleTitleIndigenous peoples and the morality of the Human Genome Diversity Project Journal of Medical Ethics 25 IssueID2 204–208

    Google Scholar 

  • Dukepoo F.C. (1998). The trouble with the Human Genome Diversity Project, Molecular Medicine Today (June): 242-243

  • C.E. Easley S.P. Marks R.E. Morgan (2001) ArticleTitleThe challenge and place of international human rights in public health American Journal of Public Health 91 IssueID12 1922–1925

    Google Scholar 

  • E.J. Emmanuel D. Wendler C. Grady (2000) ArticleTitleWhat makes clinical research ethical? Journal of the American Medical Association 283 IssueID20 2701–2711

    Google Scholar 

  • S.E. Estroff (1999) The gaze of scholars and subjects: Roles, relationships and obligations in ethnographic research N.M.P King G.E Henderson J. Stein (Eds) Beyond regulations: Ethics in human subjects research University of North Carolina Press Chapel Hill and London

    Google Scholar 

  • R. Faden T. Beauchamp (1986) A history and theory of informed consent Oxford University Press. NewYork, NY

    Google Scholar 

  • A.L. Fairchild R. Bayer (1999) ArticleTitleUses and abuses of Tuskegee Science 284 919–921

    Google Scholar 

  • C.E. Finch J.W Vaupel K. Kinsella (Eds) (2001) Cells & surveys: Should biological measures be included in social science research? Committee on Population National Academy Press. Washington, D.C

    Google Scholar 

  • M.W. Foster R.R. Sharp W.L. Freeman M. Chino D. Bernstein T.H. Carter (1999) ArticleTitleThe role of community review in evaluating the risks of human genetic variation research American Journal of Human Genetics 64 1719–1727

    Google Scholar 

  • M.W. Foster A.J. Eisenbraun T.H. Carter (1997) ArticleTitleCommunal discourse as a supplement to informed consent for genetic research Nature Genetics 17 277–279

    Google Scholar 

  • E.F. Foulks (1989) ArticleTitleMisalliances in the Barrow Alcohol Study American Indian and Alaska Native Mental Health Research 2 7–17

    Google Scholar 

  • C.H. Gladwin J.S. Peterson A.C. Mwale (2002) ArticleTitleThe quality of science in participatory research: A case study from Eastern Zambia World Development 30 IssueID4 523–543

    Google Scholar 

  • L.O. Gostin (1995) ArticleTitleInformed consent, cultural sensitivity, and respect for persons Journal of the American Medical Association 274 IssueID10 844–845

    Google Scholar 

  • L.O. Gostin (1991) ArticleTitleEthical principles for the conduct of human subject research: Populationbased research and ethics Law. Medicine and Healthcare 19 IssueID3-4 191–201

    Google Scholar 

  • R. Homan (1982) ArticleTitleThe ethics of open methods British Journal of Sociology 43 321–332

    Google Scholar 

  • C. Ijsselmuiden R. Faden (1992) ArticleTitleResearch and informed consent in Africa - another look New England Journal of Medicine 326 830–834

    Google Scholar 

  • J. Jones (1993) Bad blood: The Tuskegee syphilis experiment Free Press. New York, NY

    Google Scholar 

  • E.T. Juengst (1998) ArticleTitleGroups as gatekeepers to genomic research: Conceptually confusing, morally hazardous, and practically useless Kennedy Institute of Ethics Journal 8 IssueID2 183–200

    Google Scholar 

  • K. Khan (1991) ArticleTitleEpidemiology and ethics: The people’s perspective Law, Medicine & Health Care 19 IssueID3-4 202–206

    Google Scholar 

  • N.M.P. King G.E. Henderson J. Stein (Eds) (1999) Beyond regulations: Ethics in human subjects research University of North Carolina Press Chapel Hill and London

    Google Scholar 

  • N.M.P. King G.E Henderson J. Stein (1999b) Relationships in research: A new paradigm, N.M.P. King G.E Henderson J. Stein (Eds) Beyond regulations:Ethics in human subjects research. University of North Carolina Press. Chapel Hill and London

    Google Scholar 

  • S.J. Lakem G.M. Peterson S.B. Gruber C. Oddoux H. Ostrer F.M. Giardella (1997) ArticleTitleFamilial colorectal cancer in Ashkenazim due to a hypermutable tract in APC Nature Genetics 17 79–83

    Google Scholar 

  • E. Lindsey K. Stajduhar (1998) ArticleTitleFrom rhetoric to action: Establishing community participation in AIDS-related research Canadian Journal of Nursing Research 30 IssueID1 137–152

    Google Scholar 

  • R.J. Levine (1991) ArticleTitleInformed consent: Some challenges to the universal validity of the Western mode Law, Medicine & Health Care 19 IssueID3-4 207–213

    Google Scholar 

  • P. Lurie S.M. Wolfe (1997) ArticleTitleUnethical trials of interventions to reduce perinatal transmission of the human immunodeficiency virus in developing countries New England Journal of Medicine 337 IssueID12 853–856

    Google Scholar 

  • Macilwain C. (1996). Tribal groups attack ethics of genome diversity project, Nature 383(19 September): 208.

    Google Scholar 

  • A.C. Macauley T. Delormier A.M. McComber E.J. Cross L.P. Powin G. Paradis Kirby R.L.C. Saad-Haddad S. Desrosiers (1998) ArticleTitleParticipatory research with native community of Kahnawake creates innovative code of research ethics Canadian Journal of Public Health 89 IssueID2 105–108

    Google Scholar 

  • Macklin, R. (1999). Is ethics universal? Gender science and culture in reproductive health research, pp. 23–44 in N.M.P. King, G.E. Henderson & J. Stein (eds.), Beyond regulations: Ethics in human subjects research. Chapel Hill and London: University of North Carolina Press.

  • R. Macklin (2000) ArticleTitleInformed consent for research: International perspectives Journal of the American Medical Women’s Association 55 IssueID5 290–293

    Google Scholar 

  • Manson, S., Garroutte, E., Turner Goins, R. & Nez Henderson, P. (forthcoming). Access, relevance, and control in the research process: Lessons from Indian country, Journal on Aging and Health.

  • A. Mastrioanni J. Kahn (2001) ArticleTitleSwinging on the pendulum: Shifting view of justice in human subjects research Hastings Center Report 31 IssueID3 21–28

    Google Scholar 

  • S. Milgram (1974) Obedience to Authority Harper & Row Publishers New York, NY

    Google Scholar 

  • K. Mitchell S. Nakamanya A. Kamali J.A.G. Whitworth (2002) ArticleTitleBalancing rigour and acceptability: The use of HIV incidence to evaluate a community-based randomized trial in rural Uganda Social Science and Medicine 54 1081–1091

    Google Scholar 

  • J.D. Moreno (2001) ArticleTitleGoodbye to all that: The end of moderate protection in human subjects research Hastings Center Report 31 IssueID3 9–17

    Google Scholar 

  • National Institute of Health (NIH). (1999). Ethical and regulatory aspects of human subjects research. Proceedings and collected resources. Presented by the Department of Clinical Bioethics, NIH. Washington D.C.: NIH.

  • I.M. Norton S.M. Manson (1996) ArticleTitleResearch in American Indian and Alaska Native communities: Navigating the cultural universe of values and process Journal of Consulting and Clinical Psychology 64 IssueID5 856–860

    Google Scholar 

  • Office of Human Research Protections (OHRP, formerly OPRR, Office of Protection from Research Risks). (2001). Available from <http:www.nih.gov/grants/oprrr/oprr.htm>. Accessed March 2002.

  • Population Association of America. (2002). Available from <http://www.popassoc.org/Ethics StatementForWeb.pdf>. Accessed September 2003.

  • D.B. Resnik (1999) ArticleTitleThe Human Genome Diversity Project: Ethical problems and solutions Politics and the Life Sciences 18 IssueID1 15–23

    Google Scholar 

  • S.M. Reverby (2001) ArticleTitleMore than fact and fiction: Cultural memory and the Tuskegee syphilis study The Hastings Center Report 31 IssueID5 22–28

    Google Scholar 

  • Royal Statistical Society. Available from <http://www.rss.org.uk/membership/prof.html>. Accessed September 2002.

  • N. Rutenberg C. Kehus-Alons L. Brown K. Macintyre A. Dallimore C. Kaufman (2001) Transitions to adulthood in the context of AIDS in South Africa: Report of wave I Horizons Program Washington, D.C.

    Google Scholar 

  • J.A. Seeley J.F. Kengeya-Kayondo D.W. Mulder (1992) ArticleTitleCommunity-based HIV/AIDS research - whither community participation? Unsolved problems in a research programme in rural Uganda Social Science and Medicine 34 IssueID10 1089–1095

    Google Scholar 

  • W. Seltzer M. Anderson (2001) ArticleTitleThe dark side of numbers: The role of population data systems in human rights abuses Social Research 68 IssueID2 481–513

    Google Scholar 

  • J. Stein (1997) Empowerment and women’s health: Theory, methods, and practice Zed Books London

    Google Scholar 

  • J.M. Stephenson J. Imrie S.R. Sutton (2000) ArticleTitleRigorous trials of sexual behaviour interventions in STD/HIV prevention: What can we learn from them? AIDS 14 IssueIDsuppl 3 5115–5124

    Google Scholar 

  • Stolberg, S.G. (1998). Jewish concern grows as scientists deepen studies of Ashkenazi genes, New York Times, April 22. Available from <http://www.ishipress.com/ashkenaz.htm>. Accessed March 2002.

  • R.P. Strauss S. Sohini S. Crouse Quinn J. Goeppinger C. Spaulding S.M. Kegeles G. Millett (2001) ArticleTitleThe role of community advisory boards: Involving communities in the informed consent process American Journal of Public Health 91 IssueID12 1938–1943

    Google Scholar 

  • J.P. Streuwing D. Abeliovich T. Peretz N. Avishai M.M. Kaback F.S. Collins (1995) ArticleTitleThe carrier frequency of the BRCA1 185delAG mutation is approximately 1 percent in Ashkenazi Jewish individuals Nature Genetics 11 198–200

    Google Scholar 

  • H. Varmus D. Satcher (1997) ArticleTitleEthical complexities of conducting research in developing countries New England Journal of Medicine 337 IssueID14 1003–1005

    Google Scholar 

  • Wailoo K.A. (1999). Research partnerships and people “at risk”, pp. 102-109 in N.M.P. King, G.E. Henderson & J. Stein, (eds.), Beyond regulations: Ethics in human subjects research. Chapel Hill and London: University of North Carolina Press

  • M.L. Wax J. Cassell (1981) ArticleTitleFrom regulation to reflection: Ethics in social research American Sociologist 16 224–229

    Google Scholar 

  • C. Weijer J.A. Anderson (2001) ArticleTitleThe ethics wars: Disputes over international research Hastings Center Report 31 IssueID3 18–20

    Google Scholar 

  • C. Weijer G. Goldsand E.J. Emanuel (1999) ArticleTitleProtecting communities in research: Current guidelines and limits of extrapolation Nature Genetics 23 275–280

    Google Scholar 

  • C. Weijer (1999) ArticleTitleProtecting communities in research: Philosophical and pragmatic challenges Cambridge Quarterly of Healthcare Ethics 8 501–513

    Google Scholar 

  • M Weinstein R.J Willis (2001) Stretching social surveys to include bioindicators: Possibilities for the Health and Retirement Study, evidence from the Taiwan study of the elderly C.E. Finch J.W. Vaupel K. Kinsella (Eds) Cells & surveys: Should biological measures be included in social science research? Committee on Population National Academy Press. Washington, D.C.

    Google Scholar 

  • Yoder P.S. and Konate M. (2002). How informed? Using informed consent statements for HIV testing in a Mali DHS. Paper presented at the Population Association of America meetings, Atlanta, Georgia, May 9-11.

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Authors and Affiliations

  1. American Indian and Alaskan Native Programs, University of Colorado Health Sciences Center, Aurora, CO, 80045-0508, USA

    Carol E. Kaufman

  2. International Programs Division, Population Council, New York, NY, 10017, USA

    Saumya Ramarao

  3. American Indian and Alaska Native Programs, Nighthorse Campbell Native Health Building, Room 346, University of Colorado Health Sciences Center, Mail Stop F800, P.O. Box 6508, Aurora, CO, 80045-0508, U.S.A

    Carol E. Kaufman

  4. Room 346, 13055 East 17th Place, Aurora, CO, 80010, U.S.A

    Carol E. Kaufman & Carol E. Kaufman

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  1. Carol E. Kaufman
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Kaufman, C.E., Ramarao, S. Community confidentiality, consent, and the individual research process: Implications for demographic research. Popul Res Policy Rev 24, 149–173 (2005). https://doi.org/10.1007/s11113-004-0329-9

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