POSTING 76: DISCRIMINATION, STIGMATIZATION & HUMAN RIGHTS  


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Frerichs, R.R. Discrimination, Stigmatization and Human Rights.

SEA-AIDS Network, July 2, 1999.

Posted in response to:

SEA-AIDS, June 30, 1999

From Joe Thomas, HIVNET

In the context of our discussion on AIDS related discrimination and stigmatization, it may be worthwhile to re-discover the UNAIDS (1996) document on HIV and AIDS Related Ethical Principles. According to this document, the ethical principles that should guide, the international, national, Community and individual response to HIV/AIDS are compassion, solidarity, responsibility, tolerance, information, and empowerment.

Compassion: Compassion requires that people respond to the suffering of others, including those with HIV/AIDS, with sympathy, mercy and a willingness to help.

Solidarity: Solidarity requires that people come together to respond to the suffering, as well as the injustice, caused by HIV/AIDS,

Responsibility: Responsibility means that every individual, community, institution and nation must act responsibly towards HIV/AIDS to prevent its spread and to care for those infected and otherwise affected.

Tolerance: Tolerance requires respect for the equal worth, dignity and autonomy of people affected by HIV/AIDS, including those with different beliefs, opinions, and life styles.

Information: All individuals and communities should have available to them the information necessary to make good and necessary decisions about their health. including how to avoid HIV infection with HIV/AIDS and how to cope with its consequences.

Empowerment: All people should have the ability to protect themselves from infection by being able to refuse unsafe sex and to cope with HIV/AIDS if they or someone in their family is infected.

And the ethical principles that should guide policy formulation and implementation in HIV/AIDS health policy are well-being/ beneficence, equity/distributive justice, respect for persons, confidentiality, obligations to treat, informed consent,

Well-being/Beneficence: HIV/AIDS policies should be designed for the general good, and the benefits of the proposed policy should be weighed against the harms. There should be no infliction of harm on people, including those living with HIV/AIDS or suspected of it.

Equity/Distributive Justice: The burdens and benefits of HIV/AIDS policy should be distributed equitably among the population. No groups or individuals should be discriminated against in the context of HIV/AIDS. All people and groups should be treated fairly and equally and have equal access to available information, prevention methods, treatment and research results.

Respect for Persons: Individuals have the capacity and right to make choices and decisions about their bodies. personal integrity, and actions as long as do not diminish rights of others. aid should be free from unjustified interference by others. including in the context of HIV/AIDS. People of diminished autonomy who are dependent or vulnerable should be protected against harm or abuse.

Confidentiality: People have a right to keep confidential any information which is highly personal and the divulgence of which could be detrimental for them, including information about their HIV/AIDS status. Professional ethics requires that professionals (lawyers, health care workers, insurance, social workers) maintain strict confidentiality concerning all personal information obtained from clients in the context of their professional work.

Obligation to treat (or offer services ?): Medical ethics requires that health professionals must treat, to the best of their ability, all persons seeking their medical attention without discrimination and without prejudice based on the origin or nature of the patient's illness, including HIV/AIDS.

Informed Consent: Respect for the integrity and autonomy of the individual means that informed consent should be obtained before the administration of medical tests, drugs, treatment or participation in research, including those that are related to HIV/AIDS.

a) Elements of Informed Consent: The individual must be a competent individual who has the capacity to make decisions. S/he must have received all necessary information, and arrived at a decision without coercion, inducement or intimidation. If s/he does not have capacity to give free consent, s/he should be protected by supplementary measures or authorized representatives.

b) Information Essential to Informed Consent: Information concerning HIV/AIDS testing, treatment and research should be explained in a language the individual will understand. All benefits/ risks/ problems/ alternatives should be fully explained. No information should be withheld that would cause a reasonable person to refuse. The person should understand that they are free to reftise and/or withdraw at any time without penalty. The degree to which confidentiality can be maintained should also be explained to the person.

References:

UNAIDS (April 1996) HIV and AIDS Related Ethical Principles.

UNDP (1994)"Declaration at Dakar"

CIONS (1993) International Ethical Guidelines for Biomedical Research Involving Human Subjects

Joe Thomas, HIVNET

R.R. Frerichs Posting

Dr. Thomas has presented an interesting UNAIDS document from 1996 that presents ethical principles surrounding HIV/AIDS.   In re-visiting the UNAIDS document, I was again struck with the strong political and social slant that some follow, and the near absence of a biological reality that by necessity must guide our thinking in public health.  

Perhaps the most important concept to keep in mind is that every AIDS patient or HIV-positive person was infected by another individual, often during intimate moments or private activities that are not easily discussed at the personal level, or openly addressed at the community level.  Thus to control the epidemic, societies must figure out ways to stop HIV-positive persons from infecting susceptible persons.  In this regard, if public health efforts are successful, the epidemic will decline.  If not, the epidemic will increase, first silently as HIV infections build, and then loudly with ever increasing AIDS cases and deaths.  With that notion in mind,  let's revisit the UNAIDS points, as presented by the ever-thoughtful Dr. Thomas.

"Compassion: Compassion requires that people respond to the suffering of others, including those with HIV/AIDS, with sympathy, mercy and a willingness to help."

I fully agree with this.

"Solidarity: Solidarity requires that people come together to respond to the suffering, as well as the injustice, caused by HIV/AIDS,"

I agree that we should respond to suffering, but am not sure about the injustice component.  Perhaps it could be modified to read, "...as well as the injustice caused by someone infecting another with HIV."

Responsibility: Responsibility means that every individual, community, institution and nation must act responsibly towards HIV/AIDS to prevent its spread and to care for those infected and otherwise affected."

As a broad statement of principle, this is certainly worth supporting.

"Tolerance: Tolerance requires respect for the equal worth, dignity and autonomy of people affected by HIV/AIDS, including those with different beliefs, opinions, and life styles."

I agree with this, but not to the degree that I support keeping HIV hidden from loved ones who otherwise would likely become infected.

"Information: All individuals and communities should have available to them the information necessary to make good and necessary decisions about their health, including how to avoid HIV infection with HIV/AIDS and how to cope with its consequences."

I agree with this.  By "information necessary to make good and necessary decisions about their health," I gather that testing and informing both the tested person and the spouse is covered by this statement.

"Empowerment: All people should have the ability to protect themselves from infection by being able to refuse unsafe sex and to cope with HIV/AIDS if they or someone in their family is infected."

This statement should be modified to include, ..."to refuse unsafe sex, be told of their sexual partner's infection, and to cope with HIV/AIDS..."  Otherwise, it seems fine.

"Well-being/Beneficence: HIV/AIDS policies should be designed for the general good, and the benefits of the proposed policy should be weighed against the harms. There should be no infliction of harm on people, including those living with HIV/AIDS or suspected of it."

This statement should be modified to reflect public health concerns.  I would change the second sentence to include "There should be no intentional infection of susceptible people and no infliction of harm on those living with HIV/AIDS or suspected of it, other than what is necessary to prevent further transmission."  We have many documented cases in the United States and elsewhere of persons who knowingly and willfully infected others.  Typically in economically developed nations, this small group is dealt with by the criminal justice system.   Less clear is the  man who becomes infected, is told of his infection and learns all about the virus in a counseling session, and then knowingly goes home and continues to have unprotected sexual intercourse with his unsuspecting wife.  While such people are generally not considered criminals, their existence certainly cannot be ignored by officials entrusted to protect the public's health.

"Equity/Distributive Justice: The burdens and benefits of HIV/AIDS policy should be distributed equitably among the population. No groups or individuals should be discriminated against in the context of HIV/AIDS. All people and groups should be treated fairly and equally and have equal access to available information, prevention methods, treatment and research results."

In general I agree with the spirit of this statement.  Yet with continued public education on transmission modes, it becomes clear to most people that some willingly continue to place themselves and others at high risk.  When this occurs, the "burdens and benefits of HIV/AIDS policy" are not distributed equitably.  Similar issues occur in public health when people who should know better continue to smoke until they develop lung problems, or refuse to wear motorcycle helmets until head injuries have left them incapacitated, or refuse to have their children vaccinated until a harmful communicable disease takes its toll.  In each instance, the actions of the few who ignore public health knowledge become a burden to the many, who must pay for the consequences of such actions.

"Respect for Persons: Individuals have the capacity and right to make choices and decisions about their bodies. personal integrity, and actions as long as do not diminish rights of others. aid should be free from unjustified interference by others. including in the context of HIV/AIDS. People of diminished autonomy who are dependent or vulnerable should be protected against harm or abuse."

This section is rather difficult to read, but I understand the general intent.  I would add that "respect for persons" means that those who are infected are expected to inform others before engaging in high-risk behavior.  If the spouse or long-term lover does not understand HIV, then both persons should discuss the matter with a physician or HIV counselor to fully appreciate and understand  the danger that comes with certain activities.

"Confidentiality: People have a right to keep confidential any information which is highly personal and the divulgence of which could be detrimental for them, including information about their HIV/AIDS status. Professional ethics requires that professionals (lawyers, health care workers, insurance, social workers) maintain strict confidentiality concerning all personal information obtained from clients in the context of their professional work."

The concept of confidentiality is often viewed differently by medical and public health people.  A physician who serves patients would be expected to maintain the confidentiality of an HIV infected person.  Conversely, a public health professional who serves the larger community, might find that such confidentiality places others at risk.  By not informing susceptible persons who are in harms way, public health officials serve poorly the very people they are expected to protect.

"Obligation to treat (or offer services ?): Medical ethics requires that health professionals must treat, to the best of their ability, all persons seeking their medical attention without discrimination and without prejudice based on the origin or nature of the patient's illness, including HIV/AIDS."

I strongly support this.

"Informed Consent: Respect for the integrity and autonomy of the individual means that informed consent should be obtained before the administration of medical tests, drugs, treatment or participation in research, including those that are related to HIV/AIDS."

While I certainly agree with informed consent for participation in research, the role of consent in "administration of medical tests, drugs, treatment" is less clear.  There has been much written about consent (or lack thereof)  for groups such as children, prisoners, and the mentally incapacitated. In general the notion of informed consent is challenged when the persons in question are wards in one way or another of family or government.  I do agree, however, that in a society the principles of informed consent which apply to other diseases or health conditions should apply equally to HIV/AIDS.

HIV/AIDS has become much more than an infectious disease, due to a large extent to the fear and loathing associated with the condition.  Nevertheless those with a public health orientation must keep in mind that the disease is caused by a deadly microbe, and such microbes have little regard for ethical or moral concepts or principles.   

Documents from international organizations such as UNAIDS can be used to guide social and political thinking.  Public health officials in high-prevalence HIV nations, however, must be careful to not follow social principles at the expense of biological reasoning.  Otherwise their society will pay a very high penalty.

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