Human Rights in medicine

Learning objectives

Global Health students are able to

1. Review and analyse key ethical and human rights concerns as they relate to global health;

2. Discuss some of the central treaties and conventions related to human rights;

3. Describe the most important ethical guidelines for research with human subjects;

4. Discuss some historically significant, and contemporary, cases in human subjects’ research.
Part 1 Human Rights and Health Care
Learning Objectives
1. Review and analyse key ethical and human rights concerns as they
relate to global health;
2. Discuss some of the central treaties and conventions related to human
rights;
Core International Human Rights Treaties

• International Covenant on Economic, Social and Cultural Rights, ICESCR (196

6)
• International Convention on the Elimination of All Forms of Racial Discriminati
on, ICERD (1965)
• Convention on the Elimination of All Forms of Discrimination against Women,
CEDAW (1979)
• Convention on the Rights of the Child, CRC (1989)
• International Convention on the Protection of the Rights of All Migrant Worker
s and Members of Their Families, ICMW (1990)
• Convention on the Rights of Persons with Disabilities, CRPD (2006)
International Human Rights Treaty Bodies

• Committee on Economic, Social and Cultural Rights

• General comment No. 14: The right to the highest attainable standard of health (2000)
• General Comment No 20: Non-discrimination in economic, social and cultural rights (2009)
• General Comment No. 22: sexual and reproductive health (2016)
• Committee on the Elimination of Discrimination against Women
• General recommendation No. 24: Women and health (1999)
• Joint general recommendation/general comment No. 31 of the Committee on the Elimination of Discrimination against
Women (CEDAW) and No. 18 of the Committee on the Rights of the Child on harmful practices (2014)
• General Recommendation 35 on gender-based violence against women (2017)
• Committee on the Rights of the Child
• General Comment No. 3: HIV/AIDS and the rights of the child (2003)
• General Comment No. 4: Adolescent health and development (2003)
• General Comment No. 7: Early childhood (2006)
• General Comment No. 9: The rights of children with disabilities (2007)
• General Comment No. 13: Freedom from violence (2011)
Human Rights in health care
• Right to liberty and security of
person
• Right to privacy and
confidentiality
• Right to information
• Right to bodily integrity
• Right to life
• Right to the highest attainable
standard of health
• Right to freedom from torture
and cruel, inhuman and
degrading treatment
• Right to participation in public
policy
• Right to non-discrimination and
equality
• Right to a remedy
Examples (1) Right to…
• Liberty and security: seclusion
• Privacy and confidentiality: exchange of information between
organisations
• Information: not enough info to be able to choose treatment (health
literacy)
• Bodily integrity: right not take the Covid-19 vaccin
• Life: insufficient capacity of IC
• Health: 30 minutes to speak to your psychologist
Examples (2) Right to…
• Freedom from torture and inhuman treatment: the law on opium
causes insufficient anaesthesia in some cases
• Participation: the coverage of basic health insurance is announced on
Prinsjesdag
• Non-discrimination: GP’s reffer men more more frequent than women
to specialised care
• Remedy: professionals tend to forget information on the right to
complain
Recent examples
Determinants of Health
So this:
and this.
AAAQ
• Right to health: Healthcare (AAAQ) and determinants of health

• Triple AQ: Availability, Acceptability, Accessibility, Quality

AAAQ Availability. Enough?
• Refers to the need for a sufficient quantity of functioning public
health and health care facilities, goods and services, as well as
programmes for all.
• Availability can be measured through the analysis of
disaggregated data to different and multiple stratifiers including
by age, sex, location and socio-economic status and qualitative
surveys to understand coverage gaps and health workforce
coverage

• Examples?
AAAQ Accessibility. For everyone?
• Requires that health facilities, goods, and services must be accessible to
everyone.

Accessibility has four overlapping dimensions:

• non-discrimination
• physical accessibility
• economical accessibility (affordability)
• information accessibility.

• Examples?
AAAQ Acceptability. Do I like it?
• Relates to respect for medical ethics, culturally appropriate, and
sensitivity to gender.

• Acceptability requires that health facilities, goods, services and

programmes are people-centred and cater for the specific
needs of diverse population groups and in accordance with
international standards of medical ethics for confidentiality and
informed consent.
• Examples?
AAAQ Quality (1) Is it any good?

• Facilities, goods, and services must be scientifically and

medically approved. Quality is a key component of Universal
Health Coverage and includes the experience as well as the
perception of health care.
AAAQ Quality (2)
Quality health services should be:
• Safe – avoiding injuries to people for whom the care is intended;
• Effective – providing evidence-based healthcare services to those who need them;
• People-centred – providing care that responds to individual preferences, needs
and values;
• Timely – reducing waiting times and sometimes harmful delays.
• Equitable – providing care that does not vary in quality on account of gender,
ethnicity, geographic location, and socio-economic status;
• Integrated – providing care that makes available the full range of health services
throughout the life course;
• Efficient – maximizing the benefit of available resources and avoiding waste
• Examples?
What can professionals do with the right to
health?
• A. sleep

• B. run

• C. riot
Professional Profiles: HEALTH
ADVOCATE
We can do something in 3 ways:
• 1. A human rights-based approach to professional practice

• 2. Reacting to human rights violations perpetrated by others

• 3. A human rights-based approach to participating in the

management of health care systems and shaping of health policies
Ad 1 A human rights-based approach to
professional practice :
• The most effective way for the majority of health professionals to
fulfil their obligations under the right to health is to ensure that they
provide the highest possible standard of care and treatment in a way
that respects the fundamental dignity of each of their patients.

• This involves a number of interrelated factors including:

A human rights-based approach to
professional practice:
• Being honest, polite and respectful to all patients without
discrimination
• Ensuring professional skills are maintained to the highest possible level
• Respecting the autonomy and dignity of patients and their right to self-
determination
• Providing up-to-date and relevant information without discrimination to
support patients’ decision-making
• Respecting patient confidentiality
• Treating patients to the highest ethical standards
Suggestions?

2. Reacting to human rights violations perpetrated by others

3. A human rights-based approach to participating in the management

of health care systems and shaping of health policies
Human rights in health care:
5 questions (Arulkumaran, 2016):

1. Which health problems can we identify?

2. Which human rights could possibly be violated in this situation?
3. What are the barriers and facilitators of the health care system?
4. What procedures and regulations apply that could be of influence on
the competencies of health care professionals to deliver human-rights
based care?
5. How can we improve this situation to make sure human rights are
respected and quality of care is ensured?
Case
• Mrs Mohammad is referred by her GP to the
emergency psychiatry department
• She’s feeling depressed, anxious and she suffers from insomnia
• She’s married, her husband is diagnosed with PTSD, and has 3
children
• They live in a house with 1 bedroom. The neighbors feel that the
family is not entitled to this house since they haven’t been on a
waiting list like the have
• Mrs Mohammed speaks Arabic, she fled from Syria
Human rights in health care:
5 questions (Arulkumaran, 2016):

1. Which health problems can we identify?

2. Which human rights could possibly be violated in this situation?
3. What are the barriers and facilitators of the health care system?
4. What procedures and regulations apply that could be of influence on
the competencies of health care professionals to deliver human-rights
based care?
5. How can we improve this situation to make sure human rights are
respected and quality of care is ensured?
For example…
• 1. health problems: depression, anxiety, insomnia
• 2. Human rights: right to good housing, right to accessible, available, acceptable
care of good quality
• 3. facilitators: suitable referral system, just in time available mental health first aid.
Barriers: language? Quality of care? Costs? Referral for long term specialized
mental health treatment? Health promotion and patient information in Arabic?
• 4. Procedures: available time is 45 minutes, exchange of information to other
organisations, procedure: a doctor is in charge (no matter expertise, experience etc)
• 5. Improve: 45 minutes, keep on reporting to everyone the length of waiting lists,
culturally sensitive care in education, patient information printed out ready to
handout (and information exchange consent forms)
Summary part 1
• One of the human rights you are concerned with as a health care
professional is the right to health

• The right to health is part of the International Covenant on Economic, Social

and Cultural Rights, ICESCR (1966)

• It entails right to healthCARE (AAAQ) and determinants of health

• As a health care professional you can contribute to respecting the right to

health by awareness and action
Part 2
• Learning objectives

3. Describe the most important ethical guidelines for research with

human subjects;
4. Discuss some historically significant, and contemporary, cases in
human subjects’ research.
Why ethics in medical research?
Nazi experiments Tuskegee syphilis experiment
Tuskegee
• In 1932, the US Public Health Service, working with the
Tuskegee Institute, began a study to record the natural
history of syphilis
• The study initially involved 600 Black men – 399 with syphilis, 201
who did not have the disease.
• Participants’ informed consent was not collected.
• Researchers told the men they were being treated for “bad blood”
• In exchange for taking part in the study, the men received free
medical exams, free meals, and burial insurance.
Timeline
• 1932
• The U.S. Public Health Service (USPHS) engages the Tuskegee Institute in Macon, AL
in the USPHS Tuskegee Syphilis Study.2
• Mid-1940s
• Penicillin becomes treatment of choice for syphilis, but men in study are not
treated.
• 1972
• First news article about the study.
• The study ends, on recommendation of an Ad Hoc Advisory Panel convened by the
Assistant Secretary for Health and Scientific Affairs.
• 1997
• President Clinton issues a formal Presidential apology
 Why ethics in medical research?
• Experiments on the improvement of survival of German soldiers
(WW II) (with ao methyl-amphetamine).

• Experiments on the development and pharmaceutical treatment

of deadly diseases (without information and consent).

• Nürnberg trials: not only the carrying out of experiments in

WWII were convicted also the fact that ‘subjects’ weren’t given a
choice to participate
Declaration of Helsinki
• ETHICAL PRINCIPLES FOR MEDICAL RESEARCH INVOLVING HUMAN SUBJECTS
• FIRST: 1964
• ‘While the primary purpose of medical research is to generate new
knowledge, this goal can never take precedence over the rights and interests
of individual research subjects.
• It is the duty of physicians who are involved in medical research to protect
the life, health, dignity, integrity, right to self-determination, privacy, and
confidentiality of personal information of research subjects. The
responsibility for the protection of research subjects must always rest with
the physician or other health care professionals and never with the research
subjects, even though they have given consent.’
6 principles of ethical research (REF, Research Ethics
Framework)

• Research should be designed, reviewed and undertaken to ensure

integrity and quality
• Research staff and subjects must be informed fully about the purpose,
methods and intended possible uses of the research, what their
participation in the research entails and what risks, if any, are
involved. Some variation is allowed in very specific and exceptional
research contexts for which detailed guidance is provided in the policy
guidelines
6 principes van ethisch onderzoek (REF, Research Ethics
Framework)

• The confidentiality of information supplied by research subjects and

the anonymity of respondents must be respected
• Research participants must participate in a voluntary way, free from
any coercion
• Harm to research participants must be avoided
• The independence of research must be clear, and any conflicts of
interest or partiality must be explicit
Dutch situation: WMO, WETC and CCMO

• WMO: wet medisch wetenschappelijk onderzoek met mensen

• CCMO, centrale commissie mensgebonden onderzoek: policy on studies
with people who are incapable of making decisions on participating
• METC, medisch ethische toetsingscommissie
Thank you!
Literature
• Arulkumaran S. Health and Human Rights. Singapore Med J. 2017 Jan;58(1):4-13.
• Carlson, R. V., Boyd, K. M., & Webb, D. J. (2004). The revision of the Declaration of Helsinki:
past, present and future. British journal of clinical pharmacology, 57(6), 695–713.
https://doi.org/10.1111/j.1365-2125.2004.02103.x
• https://www.cdc.gov/tuskegee/timeline.htm
• Cohen J, Ezer T. Human rights in patient care: a theoretical and practical framework. Health Hum Rights.
2013 Dec 12;15(2):7-19
• Human Rights Watch: Interview: Health, Not Wealth, Should Determine Access to a Covid-19
Vaccine. How Opaque Vaccine Deals Could Undermine a Global Recovery from the Pandemic.
October, 29 2020. Interview: Health, Not Wealth, Should Determine Access to a Covid-19
Vaccine | Human Rights Watch (hrw.org)
• http://www.ethicsguidebook.ac.uk/Key-ethics-principles-15.html
• WHO. Factsheet: Health and Human Rights. December 2015. Available Online:
http://www.who.int/mediacentre/factsheets/fs323/en/