Module 7 LEGAL AND ETHICAL ISSUES IN ART

Module 7 Objectives By the end of the session, the participant should: Demonstrate the linkages between HIV, Human Rights and Public Health Describe the ethical and legal issues in HIV/AIDS generally Identify the ethical and Legal issues which they may encounter in ART

Module 7 Objectives (Cont..) Describe the legal framework in Kenya that addresses legal and ethical issues on HIV/AIDS Describe how to handle the ethical and legal issues in ART in special circumstances.

Module 7 Human Rights Principles Right to non-discrimination, equal protection and equality before the law Right to live Right to the highest attainable standard of physical and mental health Right to liberty and security of person

Module 7 Human Rights Principles (Cont..) Right to work Right to marry and to found a family Right to equal access to education Right to an adequate standard of living Right to social security, assistance and welfare

Module 7 Human Rights Principles (Cont..) Right to share in scientific advancement and its benefits Right to participate in public and cultural life Right to be free torture and cruel, inhuman or degrading treatment or punishment.

Module 7 Human Rights Principles Rights spelt out clearly in the Universal Declaration of Human Rights and Kenyan Constitution HIV/AIDS initiatives work best where there is supportive legal and ethical environment protective to human rights

Module 7 Special features of HIV/AIDS which raise legal and ethical issues FeatureConsequences New Epidemic infectionFear, misunderstanding and denial Long asymptomatic period & life long infectivity Infected often unaware. No action taken until people become ill No cure, limited expensive treatment Intensifies fear over testing, burden on family & health services

Module 7 Special features of HIV/AIDS which raise legal and ethical issues (Cont..) FeatureConsequences Associated with stigma and myths Patients reluctant to come forward for testing/care Affects young adultsSevere secondary costs due to loss of productive years of life and burden on family

Module 7 Legal Framework of HIV/AIDS in Kenya Amendment of Public Health Act in 1987 – HIV a ‘notifiable’ disease Guided by policies and guidelines since then Sessional Paper No. 4 Guidelines on HBC, ART, VCT, Blood Safety Other sources include: The Constitution (Bill of Rights), Common law, Relevant Statutes eg: Public Health Act

Module 7 Legal Framework of HIV/AIDS in Kenya (Cont…) HIV/AIDS declared a national disaster – Legal Notice number 170 of 26 Nov 1999 Legal Task force on HIV/AIDS established (2001) – Gazette Notice No HIV/AIDS Prevention and Control Bill (2002)

Module 7 Non-discrimination and Equality before the law Negative discrimination against persons infected or affected by HIV/AIDS is not allowable Every person infected or affected by the epidemic remains an equal member of the society with equal rights Stigmatization of people with AIDS is equally unlawful and objectionable

Module 7 Testing for HIV Mandatory testing for HIV/AIDS should be prohibited Prior and informed consent for those being tested with pre and post-test counselling and guarantee of confidentiality Testing without prior and informed consent may be permissible on grounds of necessity and only for patient’s health interest

Module 7 Testing for HIV Negligent testing resulting in misdiagnosis would invite legal actions for damages against the person and institution No blood should be transfused or human organ transplanted unless known not to be infected Anonymous and unlinked testing of populations or groups necessary for epidemiological purposes to enable surveillance and control

Module 7 Testing for HIV All pregnant women or girls should be routinely counselled about benefits of HIV testing Ensure informed consent is provided and counselling offered

Module 7 Ethical and Legal Controversies Testing for HIV and whether it should be mandatory or voluntary Confidentiality of HIV test results with ethical dilemmas on doctor/ patient relationship, employer/employee situation, partner notification Discrimination of PLWHA in employment and provision of services

Module 7 Ethical and Legal Controversies Criminalisation of deliberate infection with HIV Ethics of research

Module 7 Doctor-Patient confidentiality Confidentiality a must for all health workers Disclosure only from express consent of patient Duty of confidence may be waived by public interest if demonstrated that a greater public good would be served by disclosure than by maintaining the confidence

Module 7 Doctor-Patient Confidentiality Information requested by a patient about his HIV status should not be withheld. PLWHA should be encouraged to share information of their serostatus with their sexual partners and those at risk of infection by them

Module 7 Doctor-Patient Confidentiality If a doctor or other medical attendant reasonably believes that a person living with HIV/AIDS has failed to inform his/her partner of his/her status and continues to expose the partner to risk of infection and a reasonable period has elapsed since the date when the PLWA was requested to share the information, the doctor or medical attendant may be required to disclose the information to the sexual partner.

Module 7 Doctor-Patient Confidentiality For minors and some patients in an advanced state of AIDS, the doctor or medical attendant may be allowed to inform the closest or most appropriate family member

Module 7 Legal and Ethical Aspects of ART Broad Ethical issues that arise in ART are: Availability Affordability Accessibility Intense debate on best way to deal with scarcity Principle of justice – effective socially available medical treatment should not be denied because of inability to pay Greatest good to the greatest number: interventions that save lives or reduce suffering to the majority have stronger ethical claim than those that benefit few individuals

Module 7 Legal and Ethical Aspects of ART ART in special circumstances Occupational Exposure Sexual Assault Expectant mothers Unborn babies Legal and Ethical questions arising include: Do they need post-exposure prophylaxis How does one deal with issues of consent and confidentiality of HIV results Do they need to know the HIV status of the patients and vice versa

Module 7 Rights of the Child in the context of HIV/AIDS All children under 18, infected or affected by HIV/AIDS are recognised by the UN convention on the rights of a child UN convention states that Children have a right to life, survival and their development should be guaranteed They should have access to HIV/AIDS prevention, education, information and to the means of prevention Rights to confidentiality and privacy in regard to their HIV status

Module 7 Health Care Workers need not know the HIV status of the patients and must at all times adopt the safety measures provided by the universal standards. Equally there is no legal justification for the patient to know the HIV status of the Health Care Provider

Module 7 Case Study 1 Juma lost his job as a truck driver because he could not keep awake during long journeys. His boss had noted that he had lost weight and said that he coughed a lot. The boss requested that he visits a company doctor who tested him without his knowledge and passed on the results to the boss Does Juma have any human rights and if so, which ones? Was the doctor assisting Juma in doing the HIV test without his knowledge? In which ways would the boss and the doctor have assisted Juma

Module 7 Case Study 2 A 32 year old female school teacher comes to the clinic after she tested HIV positive at a local VCT. She feels fine and has no signs and symptoms of AIDS or any other illness. She is married to a nurse HIV positive too but is in good health. The couple desires to have children What do the Human Rights Principles relevant to HIV/AIDS state? Should the couple go ahead and get a baby? As a health worker, what would be the legal and ethical issues involved?