Internet social support groups as moral agents: The ethical dynamics of HIV+ status disclosure

Sociology of Health and Illness

Volumn 29, Issue 7, 2007, Pages 1043-1058

  Rier, David A ^a  

^a BAR ILAN UNIVERSITY   (Israel)

Author keywords

AIDS; Disclosure; Ethics; HIV; Internet; Support group

Indexed keywords

ARTICLE; ETHICS; HUMAN; HUMAN IMMUNODEFICIENCY VIRUS INFECTION; INTERNET; INTERPERSONAL COMMUNICATION; MORALITY; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; SELF HELP; SOCIAL SUPPORT;

DISCLOSURE; HIV INFECTIONS; HIV SEROPOSITIVITY; HUMANS; INTERNET; MORAL OBLIGATIONS; QUALITATIVE RESEARCH; SELF-HELP GROUPS; SOCIAL SUPPORT;

EID: 37349063178     PISSN: 01419889     EISSN: 14679566     Source Type: Journal    
DOI: 10.1111/j.1467-9566.2007.01023.x     Document Type: Article

References (72)

1. Adam, B. (2005) Constructing the neoliberal sexual actor: responsibility and care of the self in the discourse of barebackers, Culture, Health and Sexuality, 7, 333 46.
2. AIDS Alert (2003) Too many still fail to tell sex partners of serostatus: national study shows major problems, AIDS Alert, 18, 8, 106.
3. American Civil Liberties Union (2004) State criminal statutes on HIV transmission - 2004 (Lesbian and Gay Rights Project AIDS Project).
4. American Sociological Association (1999) Code of Ethics [approved June, 1997].
5. Bargh, J.A., McKenna, K.Y.A. Fitzsimons, F.M. (2002) Can you see the real me? Activation and expression of the 'true self' of the Internet, Journal of Social Issues, 58, 33 48.
6. Bayer, R. (1989) Private Acts, Social Consequences. NY : Free Press.
7. Bayer, R. (1996) AIDS prevention - sexual ethics and responsibility, New England Journal of Medicine, 334, 1540 42.
8. Bray, S.J. (2003) Criminal prosecutions for HIV exposure: overview and analysis, Yale University Center for Interdisciplinary Research on AIDS Working Paper, 3, 1 (Fall).
9. Bunton, R. (1997) Popular health, advanced liberalism and Good Housekeeping magazine. In Petersen, A. Bunton, E. (eds) Foucault, Health and Medicine. London : Routledge.
10. CDC (1986) Current trends: additional recommendations to reduce sexual and drug abuse-related transmission of Human T-Lymphotropic Virus Type III/Lymphadenopathy-Associated Virus, Morbidity and Mortality Weekly Report, 35, 10, 152 55.
11. CDC (2006) Twenty-five years of HIV/AIDS - United States, 1981-2006, Morbidity and Mortality Weekly Report, 55, 21, 585 89.
12. Ciccarone, D.H., Kanouse, D.E., Collins, R.L., Miu, A., Chen, J.L., Morton, S.C. Stall, R. (2003) Sex without disclosure of positive HIV serostatus in a US probability sample of persons receiving medical care for HIV infection, American Journal of Public Health, 93, 949 54.
13. Collins, C., Morin, S.F., Shriver, M.D. Coates, T.J. (2000) Designing Primary Prevention for People Living with HIV. AIDS Policy Research Center and Center for AIDS Prevention Studies. Policy Monograph Series - March.
14. Connery, B.A. (1997) IMHO: Authority and egalitarian rhetoric in the virtual coffeehouse. In Porter, D. (ed.) Internet Culture. NY : Routledge.
15. Cusick, L. Rhodes, T. (1999) The process of disclosing positive HIV status: findings from qualitative research, Culture, Health and Sexuality, 1, 3 18.
16. Danziger, R. (1996) An epidemic like any other? Rights and responsibilities in HIV prevention, British Medical Journal, 312, 1083 84.
17. Denzin, N.K. (1998) In search of the inner child: co-dependency and gender in a cyberspace community. In Bendelow, G. Williams, S.J. (eds) Emotions in Social Life. London : Routledge.
18. DeRosa, C.J. Marks, G. (1998) Preventive counseling of HIV-positive men and self-disclosure of serostatus to sex partners: new opportunities for prevention, Health Psychology, 17, 224 31.
19. Dodds, C. (2002) Messages of responsibility: HIV/AIDS prevention materials in England, Health, 6, 139 71.
20. Duffin, R. (2004) Serostatus, risk and responsibility, Social Research Briefs [National Centre in HIV Social Research], 6, 1 2.
21. Epstein, S. (1996) Impure Science. Berkeley : California.
22. Esquivel, A., Meric-Bernstam, F. Bernstam, E.V. (2006) Accuracy and self-correction of information received from an Internet breast cancer list: analysis of posting content, British Medical Journal, 332, 939 42.
23. Ess, C. the AoIR [Association of Internet Researchers] Ethics Working Committee (2002) Ethical decision-making and Internet research: Recommendations from the AoIR ethics working committee (approved by AoIR, 27 November). Available from URL: http://www.aoir.org/reports/ethics.pdf [retrieved 6 July 2006].
24. Eysenbach, G., Powell, J., Englesakis, M., Rizo, C. Stern, A. (2004) Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions, British Medical Journal, 328, 1166 71.
25. Eysenbach, G. Till, J.E. (2001) Ethical issues in qualitative research on Internet communities, British Medical Journal, 323, 1103 5.
26. Fox, N.J., Ward, K.J. O'Rourke, A.J. (2005a) The 'expert patient': empowerment or medical dominance? The case of weight loss, pharmaceutical drugs and the Internet, Social Science and Medicine, 60, 1299 309.
27. Fox, N.J., Ward, K.J. O'Rourke, A.J. (2005b) Pro-anorexia, weight-loss drugs and the Internet: an 'anti-recovery' explanatory model of anorexia, Sociology of Health and Illness, 27, 7, 944 71.
28. Frankel, M.S. Siang, S. (1999) Ethical and Legal Aspects of Human Subjects Research on the Internet: a Report of a Workshop, June 10-11. American Association for the Advancement of Science. Available from URL: http://www.aaas.org/spp/sfrl/projects/intres/report.pdf [retrieved 6 July, 2006].
29. Frascino, R.J. (2005) Must disclose it is law - Response from Dr. Frascino. Ask the experts about fatigue and anemia. Available from URL: http://www.thebody.com/Forums/AIDS/Fatigue/Current/Q170626.html?h60o [retrieved 6 July 2006].
30. Gillett, J. (2003) Media activism and Internet use by people with HIV/AIDS, Sociology of Health and Illness, 25, 6, 608 24.
31. Glaser, B.G. Strauss, A.L. (1967) The discovery of grounded theory. NY : Aldine de Gruyter.
32. Granovetter, M. (1973) The strength of weak ties, American Journal of Sociology, 78, 1360 80.
33. Greene, K., Derlega, V.J., Yep, G.A. Petronio, S. (2003) Privacy and Disclosure of HIV in Interpersonal Relationships: a Sourcebook for Researchers and Practitioners. Mahwah, NJ : LEA [Lawrence Erlbaum Associates].
34. Haraway, D. (1991) Simians, Cyborgs, and Women. NY : Routledge.
35. Herek, G.M., Capitanio, J.P. Widaman, K.F. (2002) HIV-related stigma and knowledge in the United States: prevalence and trends, 1991-1999, American Journal of Public Health, 92, 371 77.
36. Hering, Shirly (2000). The Internet: a liberating medium? The illness narratives of those affected by AIDS as shaped and presented in virtual support groups on the Internet. Master's thesis, Department of Sociology and Anthropology, Bar-Ilan University.
37. Indyk, D. Rier, D.A. (1993). Grassroots AIDS knowledge: implications for the boundaries of science and collective action, Knowledge: Creation, Diffusion, Utilization, 15, 3 43.
38. King, S.A. (1996) Researching Internet communities: proposed ethical guidelines for the reporting of the results, The Information Society, 12, 2, 119 27.
39. Klaw, E., Huebsch, P.D. Humphreys, K. (2000) Communication patterns in an on-line mutual help group for problem drinkers, Journal of Community Psychology, 28, 535 46.
40. Klitzman, R. Bayer, R. (2003) Mortal Secrets: Truth and Lies in the Age of AIDS. Baltimore : Johns Hopkins.
41. Maman, S. Medley, A. (2004) Gender dimensions of HIV status disclosure to sexual partners: rates, barriers, and outcomes. A review paper. Geneva : Department of Gender and Women's Health, World Health Organization.
42. Mass, L.D. (1995) [Letter], The Nation 17 April, 510.
43. Mayer, K.H. (2004) Recommendations for incorporating human immunodeficiency virus (HIV) prevention into the medical care of persons living with HIV, Clinical Infectious Diseases, 38, 1, 104 21.
44. Mendelson, C. (2003) Gentle hugs: Internet listservs as sources of support for women with lupus, Advances in Nursing Science, 26, 299 306.
45. Nettleton, S. (1997) Governing the risky self: how to become healthy, wealthy, and wise. In Petersen, A. Bunton, E. (eds) Foucault, Health and Medicine. London : Routledge.
46. Nettleton, S., Burrows, R. O'Malley, L. (2005) The mundane realities of the everyday lay use of the Internet for health, and their consequences for media convergence, Sociology of Health and Illness, 27, 7, 972 92.
47. Parsons, J.T., Schrimshaw, E.W., Bimbi, D.S., Wolitski, R.J., Gomez, C.A. Halkitis, P.N. (2005) Consistent, inconsistent, and non-disclosure to casual sexual partners among HIV-seropositive gay and bisexual men, AIDS, 19, Supplement I, S87 S97.
48. Petersen, A. (1997) Risk, governance and the new public health. In Petersen, A. Bunton, E. (eds) Foucault, Health and Medicine. London : Routledge.
49. Pitts, V. (2004) Illness and Internet empowerment: writing and reading breast cancer in cyberspace, Health, 8, 33 59.
50. Radin, P. (2006) 'To me, it's my life': Medical communication, trust, and activism in cyberspace, Social Science and Medicine, 62, 591 601.
51. Reeves, P.M. (2000) Coping in cyberspace: the impact of Internet use on the ability of HIV-positive individuals to deal with their illness, Journal of Health Communication, 5, Supplement, 47 59.
52. Rhodes, T. Cusick, L. (2000) Love and intimacy in relationship risk management: HIV positive people and their sexual partners, Sociology of Health and Illness, 22, 1, 1 26.
53. Rier, D.A. Indyk, D. (2006) Flexible rigidity: Supporting HIV treatment adherence in a rapidly-changing treatment environment, Social Work in Health Care, 42, 3/4, 133 50.
54. Robinson, K.M. (2001) Unsolicited narratives from the Internet: a rich source of qualitative data, Qualitative Health Research, 11, 706 14.
55. Rotello, G. (1995) [Letter], The Nation 17 April, 510.
56. Seale, C. (2005) New directions for critical internet health studies: Representing cancer experience on the web, Sociology of Health and Illness, 27 515 40.
57. Seale, C., Ziebland, S. Charteris-Black, J. (2006) Gender, cancer experience and Internet use: a comparative keyword analysis of interviews and online cancer support groups, Social Science and Medicine, 62, 2577 90.
58. Serovich, J.M. Mosack, K.E. (2003) Reasons for HIV disclosure or nondisclosure to casual sexual partners, AIDS Education and Prevention, 15, 70 80.
59. Sharf, B.F. (1997) Communicating breast cancer on line: support and empowerment on the Internet, Women and Health, 26, 65 84.
60. Sheon, N. Crosby, G.M. (2004) Ambivalent tales of HIV disclosure in San Francisco, Social Science and Medicine, 58, 2105 18.
61. Shilts, R. (1987) And the Band Played On. NY : St. Martin's.
62. Signorile, M. (1995) HIV-positive, and careless, New York Times, 26 February.
63. Simoni, J.M. Pantalone, D.W. (2004) Secrets and safety in the age of AIDS: does HIV disclosure lead to safer sex? Topics in HIV Medicine, 12, 4, 109 18.
64. Sixsmith, J. Murray, C.D. (2001) Ethical issues in the documentary data analysis of Internet posts and archives, Qualitative Health Research, 11, 423 32.
65. Stein, M.D., Freedberg, K.A., Sullivan, L.M., Savetsky, J., Levenson, S.M., Hingson, R. Samet, J.H. (1998) Sexual ethics: disclosure of HIV-positive status to partners, Archives of Internal Medicine, 158, 253 57.
66. Street, R.L. (2003) Mediated consumer-provider communication in cancer care: the empowering potential of new technologies, Patient Education and Counseling, 50, 99 104.
67. Suler, J. (2004) The online disinhibition effect, CyberPsychology and Behavior, 7, 321 6.
68. Turkle, S. (1995) Life on the Screen: Identity in the Age of the Internet. NY : Simon and Schuster.
69. Wallace, P. (2001) The Psychology of the Internet. Cambridge : Cambridge University Press.
70. Walstrom, M.K. (2000) 'You know, who's the thinnest?' Combating surveillance and creating safety in coping with eating disorders online, CyberPsychology and Behavior, 3, 761 83.
71. Walther, J.B. (2002) Research ethics in Internet-enabled research: human subjects issues and methodological myopia, Ethics and Information Technology, 4, 205 16.
72. Wolitski, R.J., Rietmeijer, C.A.M., Goldbaum, G.M. Wilson, R.M. (1998) HIV serostatus disclosure among gay and bisexual men in four American cities: general patterns and relation to sexual practices, AIDS Care, 10, 599 610.