Bioethics Development Foundation (BIDEFO): Building Capacity for Bioethics Oversight through Education, Consultancy, Advocacy, Research and Publication

Dr John Mary Mooka Kamweri, Eleanor Nanyingi, Tadeo Atalemwa, Lubowa Mugagga, Joseph Mukasa, Emmanuel Nkurunziza, Charles Jurua, Davis Rusoke, and Stephen Lubuye

Bioethics Development Foundation (BIDEFO) is a not for profit private organization founded by pioneers students of Bioethics (class 2017) at Uganda Martyrs University to advance the cause of bioethics infrastructure development in Uganda, through education, consultancy, advocacy, research and publication. BEDEFO is hosted at the Institute of Ethics.

The Health Professional Councils and the National Drug Authority attest to increased cases of professional misconduct; health care risks to patients, health workers and the general public; inadequate inspection and supervision; and, unethical research (NDA, AHPC, UMDPC, UNMC, UPB, 2018; UNCST 2014). The National Environment Management Authority is concerned with the increase in soil degradation, water and air pollution, poor waste management, deforestation, over mining, among others (NEMA, 2016/2017). On the other hand, matters of food security and safety remain problematic. The President of Uganda rejected the 2017 Biosafety and Biotechnology Bill, in the form it was passed into law by the Parliament of Uganda to adopt Genetically Modified Organisms (GMOs). Human rights violations are often reported concerning human and organ trafficking, torture, kidnaps, human sacrifices, domestic violence, and corruption. Efforts to address these problems include revoking licenses, punitive measures, prosecution, and supervision. The increasing number of court cases regarding the right to health (CEHUD & Development & 3 Ors v Attorney General (CONSTITUTIONAL PETITION No.10 of 2011) [2012] UGCC 4 (5 June 2012), negligence and malpractice (Watsemwa & Anor v Attorney General (CIVIL SUIT NO.675 of 2006) [2006] UGCCD 16 (20 February 2015), among others, are indicative of a growing bioethics gap in Uganda. BIDEFO seeks to contribute – through education, consultancy, advocacy, research and publication – towards sound bioethics capacity building in Uganda.

Aim

To building capacity in ethics oversight through education, consultancy, advocacy, research and publication

Objectives

  1. To educate, inform and enable consultations on the promotion of the dignity of persons and the protection of human rights, when science and technology engage human beings.
  2. To provide ethics/bioethics guidance to organizations, institutions and individuals
  3. To engage in research and publications on national and international bioethical needs
  4. To advocate for the betterment of clinical research, social justice, health care, protection of the natural environment, national policies, among others, so as to enhance the well-being of humanity.
  5. To build ethics/bioethics solidarity within and beyond national boundaries.

Method

Normative analysis

Normative reflection is about “ideas we should pursue and the obligations we should accept (Thacher 2006, p. 1631).” Because normative analysis engages ethical reasoning it helps us clarify, justify or fundamentally change our initially considered judgment. Bioethics applies ethical decision making to life sciences and technology that engages the human condition and its environment. Those actions which a person ought to do, we call right; those actions which a person ought not to do we call wrong. The justification upon which we base our judgment is either ethical theories or ethical principles. Ethical theory is understood as “a system of related principles which serve as a model, or framework, for reflecting/thinking about ethical issues and problem (Wright, 23).” An ethical principle provides a practical guide to reasoning through moral dilemmas to conclusions.

Activities

  1. Bioethics education
    • Training of research ethics committees (RECs)
    • Training of Clinical Healthcare Ethics Committees (HECs)
    • Conferences/seminars on bioethics issues
    • Participating in television/radio talk shows
  2. Bioethics Consultancy
    • Analyzing cases to provide ethics and legal clarity
    • Building capacity for ethics and legal consultancy through training
    • Advising on ethical policy development
  3. Advocacy
    • Defence and promotion of rights
    • Review and applause of sound ethical policy
    • Networking with local and international partners for sound ethics oversight
  4. Research and Publication
    • Generating evidence-based resources
    • Engage indigenous thought process in bioethics discourse
    • Promote cultural and religious sensitivity in bioethics discourse

References

  • NDA, AHPC et al. (2018) Joint Communiqué by Health Professional Councils and National Drug Authority, Kampala, 18th July 2018.
  • NEMA (2017) National State of the Environment Report 2016/2017, Kampala: NEMA.
  • UNCST (2014) National Guidelines for Research Involving Humans as Research Participants, Kampala: UNCST.
  • Wright, Richard A. 1987. The Practice of Ethics: Human Values in Health Care. New York: McGraw-Hill, Inc.