Bridging the Gap: Conference Record [Abstract book, International Conference on AIDS (12th: 1998: Geneva, Switzerland)]

12th World AIDS Conference

Abstracts 44126-44131 963

regimens, raises ethical issues about how best to assure access to HAART to all
PLWH/As for whom it is indicated.
Project: In 1997 the New York State AIDS Advisory Council, which advises
State government, formed a workgroup to examine this important issue. The
35-member workgroup, representing the medical, public health and AIDS communities of New York, met through 1997, reviewing historical and ethical perspectives on adherence and hearing testimony from members of affected communities
and providers of treatment, social support and substance abuse services.
Results: The workgroup developed a set of eight principles with accompanying implementation recommendations for New York State. The principles address
issues ranging from the availability of HIV counseling and testing, universal access to health care including specialty HIV care, the obligation of health care
providers to inform patients about all potentially beneficial treatments, to the need
for physicians to consider individual and public health risk in making treatment
decisions.
Lessons Learned: Important outcomes of the workgroup's deliberations include the following axioms: universal access to new treatments is essential; the
development of HIV treatment plans must be a collaborative process between
physician and patient; adequate and appropriate support services/systems must
be in place to address the basic needs of potentially non-adherent patients; and
special considerations must be made for patients who cannot fully participate in
treatment plan development.
475*/44126 Ethical vs. moral duties when HIV/AIDS clinical
trials end
Jose Luis Valdespino Gomezl1, M.L. Garcia Garcia22, M. Palacios Martinez22,
L. Ferreyra Reyes22, M.E. Mayar Maya22, M.E. Jimenez Corona22, M. Ramos
Madrigal33. 1Ave Universidad 655, Cuernavaca Morelos CP 62508; 2lnstituto
Nacional De Salud Public Cuernavaca MOR; 3Fundacion Mexicana De Lucha
Contra El Sida, Mexico
Background: PWA have limited accessibility to clinical care in developing countries due to high costs. In particular, high quality primary care services (PCS) are
not generally available.
Methods: A multicentric prospective, clinical trial for chemoprophylaxis of tuberculosis was conducted in Mexico City from Dec, 1993 to October 1997 on
non pregnant adult, HIV-1 positive, Karnofsky scale above 60%, PPD positive
subjects. Three clinical sites were established for follow up of participants for
administration of study drugs, periodical CD4+ counts, surveillance for adverse
effects, and six months visits for documentation of endpoints. Clinical care was
provided within a nongovernmental organization. Funding from the National Institutes of Health (USA)/Panamerican Health Organization and Mexican Ministry of
Health supported the project. Informed consent was obtained from participants.
Results: 181 patients were recruited and followed for an average of 40.4
months. Participation in the clinical trial represented the only option for PCS for
149 (82%) patients. Participation in the study provided participants with "warm"
clinical care, routine indicators of disease progression and advisory and referral
for specialized care. 91 (50%) patients were referred to secondary/tertiary care
for provision of antiviral treatment and diagnosis and treatment of opportunistic
diseases. Most participants will not have access to these PCS after conclusion of
the clinical trial. National and international ethical regulations were followed
Conclusions: Unfortunately we are not able to ensure continuation of quality
PCS for participants. We have not been successful in enrolling subjects in another
clinical trial. Although ethical regulations have been followed and scientific purposes have been achieved, we, as investigators, feel frustrated as we consider
that a moral commitment is established with participants which goes beyond
legal aspects. Moral obligations within clinical trials, beyond ethical and scientific
issues, should be discussed.
44127 Ethical dilemma of modernization in Chinese society: Its
consequences in HIV prevention education
Ping Keung Luis, V.F. Yeung. Hong Kong Polytechnic University China
One of the typical stories of how Hong Kong women are infected with HIV is
this: She married a promiscuous man. Her husband is infected through sexual
discourse with a commercial sex worker (CSW) or an ye-nie ("second wife", a
traditional title for a woman who "marries" an already-married man and, nowadays
more often than not, is an ex-CSW) in mainland China. The infected woman is not
promiscuous; she is innocent; she is a victim of the traditional tolerance of male
promiscuity. She asks in great anguish: How can my husband be promiscuous
when he agrees that he and I are equal?
Equality of sexes is only recent in Chinese society, and the idea was brought
into the public sphere less than a century ago when the Ching Dynasty collapsed
and China began to modernize. Nowadays most men accept the idea publicly
and yet some of them practise promiscuity secretly. It is an ethical dilemma, and
more importantly an obstacle to the practice of safe sex between spouses, when
the promiscuous husband is afraid to ask for the use of condom as it may arouse
his wife's suspicion.

This paper attempts to analyse historically the cultural change which gave
rise to the dilemma, to study empirically the related attitudinal conflict between
the sexes using some local survey data, and finally to discuss possible ways of
removing the obstacle in HIV prevention education through active construction
and presentation of rhetoric for and to the clients.

44128 Obtaining "informed consent" for research in a country
with marked linguistic and cultural diversity
Alan Haworth1, S. Muska2, L. Mzizi1, C. Hamauhwa3. 'Dept Of Psychiatry
University of Zambia PO. Box 30043 Lusaka; 2Project San Francisco, Lusaka;
3National Counselling Services Unit, Lusaka, Zambia
Issues: Research on human subjects demands informed consent. Adequate
communication can be severely affected by lack of understanding of the difficulties of translation of scientific information. Translation is more difficult in societies
where rapid evolution of language is taking place.
Project: In Zambia there is no universally used indigenous language but a
process of rapid diffusion of linguistic usage, based mainly on two languages
is taking place. The types of linguistic repertoire of groups and individuals with
varying ethnic and educational backgrounds was studied with reference to their
potential understanding of the nature, benefits and hazards of becoming research
subjects.
Results: Although two indigenous languages are, with English, becoming linguae francae the vocabulary used relates essentially to social, domestic and
commercial interactions; major difficulties are experienced in conveying scientific
medical concepts. Many examples are found of conceptual distinctions which can
be expressed in English but impossible of translation into any form of "national
indigenous language", comprehensible to the majority.
Lessons learned: Information provided in English to potential research subjects should be clear and concise and avoid over-inclusion. For some forms of
research, it may be necessary to limit choice of subjects to those with specified
minimal education and knowledge of English. In some cases, group briefing sessions with use of three languages simultaneously can overcome some linguistic
obstacles.
44129 1 Ethical implications of the medical and existential
uncertainty related to new antiretroviral therapies
Marli Huijer. Vrije Universiteit, Fac. of Medicine, Philosophy & Medical ethics VD.
Boechorststraat 7, Netherlands
The new antiretroviral therapies know many uncertainties, such as:
- the interpretation of the various clinical trials
- the long-term-effects
- the optimal treatment regime in general, and for a particular patient
- the therapeutic effects on a particular patient
People with HIV who are offered antiretroviral treatment have to deal with these
medical uncertainties, but also with existential ones: the certainty that death is
coming rather soon is replaced by an uncertainty in which physicians talk about
possibilities to survive.
Project: Moral deliberations of people with HIV and their physicians on antiretroviral treatment.
Results: In this paper, the ethical approach of informed consent is compared
with an approach in which personal values are part of the interaction between
physician and patient. Suggestions are given how physicians might bring in
personal values in the talk on antiretroviral therapies.
The ethical procedure of informed consent is not an adequate approach to help
the patient decide on antiretroviral therapies. The many medical and existential
uncertainties surrounding the new antiretroviral therapies require an ethical approach in which physician and patient weigh personal values against the costs
and benefits of the therapy.
44130 Informed consent: The right to unbiased information
about HIV and AIDS treatment for people at risk for AIDS
Michael Baumgartner1, K. Parker2. 1Oberdorfstrasse, Muenchenbuchsee,
Switzerland; 2Human Rights Attorney Human. Law Proj., San Francisco, CA,
USA
Issue: No treatment shall be given to patients without her/his informed consent,
based on unbiased information about treatment, necessity and availability of
treatments.
Project: Accessing written information on anti-HIV/AIDS-treatments to which
people with HIV/AIDS diagnosis are exposed to, prior to making treatment decisions, in public HIV/AIDS-clinics in S'land and England. Independent assessment
of obtained information. Assessing the inter-personal relationship between physician and patient in the context of treatment.
Evaluation of WHO/UN-literature on patient-rights.
Conclusions: To be presented prior to publication at W-A-Conference, Geneva.
Based on findings authors will formulate proposal for UN-HR-declaration, following the GA res. 46/119, Dec. 17/91 "Principles For The Protection Of Persons
With Mental Illness".
|44131 Legal frame work and how does it effecting youths on
AIDS awareness program

Mohammad AI-Amin. Alpana Plaza 6 Fl. 51, Dr. Qudrate Khuda Road.
Dhaka- 1205, Bangladesh
Objective:lt was part of an other survey program on AIDS to find the over view
of young generation on AIDS issue. To understand how existing Social, Political,
Religious law and legislation's are effecting the AIDS/HIV situation in Bangladesh.