Conceptual and Practical Challenges to the Ethics of Women's Health Care and Medical Research

Ghaiath M. A. HusseinAssistant Professor of BioethicsFaulty of medicine, King Fahad Medical CityRiyadh, Saudi ArabiaEmail: ghaiathme@gmail.com Phone: 00966566511653

UNESCO Regional Conference on Ethics of Women's Health Care and Research (Cairo University, Dec. 8, 2011)

Outline•Basic definitions•What are the sources of ethical concerns in

healthcare for and research on/for women?•Conceptual challenges related to care for

women•Ethical challenges to healthcare for women•Examples of the ethical issues that arise

during provision of care to women•Ethical challenges to research on/for women•Recommendations for future steps

What do we mean byEthics Morality: the beliefs and standards of good

and bad, right and wrong,

Ethics is defined as the systematic study of

morality.

Bioethics: is normative ethics applied to decision-making and public policy in the domains of biology, health care and research.

Conceptual

To what do we refer in deciding what is

right/wrong?

Philosophy? Utlitarian, deontology, feminisme, virtue, rights-based, principle-based?

Religion? Islam? Which interpretations? Christianity?

Which church?

Practical

How are we going to so what we decided as

right in healthcare, research?

How are we going to manage situations

when ethical guidance is violated?

What makes healthcare/research to women ethically sensitive?

Status Ethical implications•Diminished physical power•Less educational levels

diminished decision-making capacityProne to coercion, abuse, exploitationAbsent or inefficient contribution to care/research (bear more burden, e.g. contraceptives)

•Less involvement in ethics

Less representation in ethics committees (policy, research, clinical)

•Economic dependence Diminished access to care

•Diminished political empowerment

Laws/regulations/guidelines that protect woman are either absent, irrelevant, or not affectiveLack of gender-sensitive healthcare (research agenda)Diminished representativeness in research oversight mechanisms

•As a child-bearer Restricted personal rights (vs. rights of the fetus &/or the father?)

Conceptual Challenges•Lack of guidance (moral status of fetus,

surrogacy, new RH technologies)•Contradicting guidance (national vs. int’l)•Different interpretations of notions in

guidance (int’l declarations)•De-alignment of legal and ethical guidance•Dominance of community values over

religious guidance (female circumcision)•Abuse of variation in religious

interpretations ▫catholic church and pro-life groups▫irrational jurisprudence rulings (Fawtas)

Practical challenges in care provision

•Lack of gender-sensitive healthcare▫Waiting areas▫Privacy▫Confidentiality (e.g. husband access to the

wife’s medical information)•Gender insensitive policies (e.g. consent)

•Male-led management•Gender insensitive (discriminative) practices (e.g. C-sections)

Examples of gender imbalanced care

• Men’s interference (marital authorization) in the women’s RH decisions (contraception, abortion, protected sex);

• Diminished freedom of consent (in non-RH issues)• Woman’s right to know (her spouse’s STD status, treatment

alternatives, etc.) • STDs protection (and contraception) is more woman-

dependant (pills, IUCDs, hormonal therapy, etc.)• Women with HIV/AIDS: right to treatment, stigmatization,

confidentiality, counseling strategies on pregnancy continuation/ termination, future child bearing, and use of contraception

• Breach of woman’s confidentiality by male family members• Women get tested in ANC visits, while men are discovered

only on voluntary basis (except for visa purposes?)• Women’s dependence on men to get access to care• Undue denial of safe abortion, even when religiously

allowed

Challenges related to researchResearch topics

•Clinically-focused topics•Lack of gender-related studies on determinants of health•Lack of studies on vulnerable groups among women (age, sexual-orientation, disability)

Research methodologies

• Inclusion/exclusion biases

• Facility-based studies (access)

• Consent • ‘don’t get

pregnant during trial’

• Inadequate Compensation

Research oversight

• Women’s issues (risks) are not well acknowledged

• Ethical guidelines are developed mostly by ‘white men’

• Gender-Imbalanced REC memberships

HOW TO APPROACH THESE CHALLENGES?

How our network can help in resolving conceptual and practical challenges to women’s health & research?

Individual level

Organizational level

Public policy level

Approach to ethical challenges in healthcare• Individual level

▫ Raise awareness about patients right, in general, and women’s right in particular

▫ Positive involvement of men in advocacy for women▫ Assist in minimizing the women’s illiteracy and financial

dependence• Organizational/Institutional level

▫ Provide gender-sensitive care (waiting areas, examination rooms ,etc.)

▫ Train providers on ethics (FAB)▫ Balanced gender management

• Policy-making level ▫ Develop gender-sensitive policies▫ Encourage women involvement in policy-setting▫ Continuous communication with Ulama (scholars) regarding

women health▫ Advocate for women’s health issues among politicians and policy

makers

Approach to ethical challenges in research

• Train researchers in research ethics, especially vulnerability• Improve gender balance in REC structures• Educate ethics committees members on women’s health

research, gender analysis, and participatory action methodologies, and to ensure gender issues and analysis are part of funding criteria

• Train more female researchers on research methods and ethics• Encourage/Adopt community-based methodologies• Review the current guidelines to makes them more gender-

sensitive• Funding agencies should encourage research with members

reflecting the diversity of the population;• North-South exchange of experience and head for sustainable

development, guided by the MDGs related to maternal health

Questions and

Discussion Please feel free to contact me:Ghaiath M. A. HusseinEmail: ghaiathme@gmail.com Phone: 00966566511653Website:https://sites.google.com/site/medicalethicscourse