Derrick Aarons, MD, PhD
Introduction
Challenges posed by technological advances in medicine and their concomitant social issues gave birth to the field of bioethics in Western countries during the 1970s (1). Deliberations in bioethics customarily include several domains of human life in which both health and socio-cultural considerations play an important part. By the 1990s, the concepts of bioethics and many of the issues it raises were introduced to the Caribbean and became discussion points at medical and research conferences (2, 3).
The Caribbean, parts of which are sometimes linked to Central America, consists of four distinct socio-cultural and linguistic groups of people, reflecting different periods of European colonization over 300 years. The largest are the descendants of the Spanish period (4), including Cuba, the Dominican Republic, and Puerto Rico. Next are the descendants of French colonization, including Haiti, Martinique, Guadeloupe, St. Martin, and St. Barthelemy. Those currently reflecting British socio-cultural colonization include Jamaica, Trinidad & Tobago, Barbados, the Bahamas, and the members of the Organization of Eastern Caribbean States (the OECS, which are listed below). The smallest in population are the descendants of Dutch colonization, which are the countries of Aruba, Curacao, and Sint Maarten, along with the three public bodies of Bonaire, Sint Eustatius, and Saba.
In describing the evolution of bioethics in the Caribbean, this article will focus on those countries that are currently served through a Caribbean Public Health Agency (CARPHA) public health accord. Bioethics has its roots in health care and health, and these countries have seen a common evolution of applied ethics in those areas.
The objectives of CARPHA, the regional public health institution in the Caribbean, are to promote the physical and mental health and the wellness of people within the Caribbean. The Agency is responsible for providing strategic direction in analyzing, defining, and responding to the public health priorities of the 24 member states across the Caribbean (5). These member states include Anguilla; Antigua & Barbuda; Aruba; the Commonwealth of the Bahamas; Barbados; Belize; Bermuda; the BES (Bonaire, Sint Eustatius, and Saba) Islands; the British Virgin Islands; Cayman Islands; Curacao; the Commonwealth of Dominica; Grenada; Guyana; Haiti; Jamaica; Montserrat; St. Kitts & Nevis; St. Lucia; Sint Maarten; St. Vincent & the Grenadines; Suriname; Trinidad & Tobago; and the Turks & Caicos Islands.
These countries generally face similar challenges, are underserved in health equity, and have limited access to the growth of technology that occurs abundantly in most countries of the geographical North (the more industrialized countries). Thus, while bioethics in industrialized countries mainly revolve around issues surrounding autonomy and individual rights, in Caribbean and Latin American countries the major issues address matters of justice and the distribution of scarce resources (6). Unfortunately, issues of injustice in the Caribbean region are insufficiently addressed in most of the bioethics discourse in Western countries, and despite the geographical proximity and socio-economic connections between the Caribbean and North America, insufficient dialogue occurs between the bioethics cultures in these two regions (7).
In this document, we will examine some of the bioethical challenges faced by Caribbean countries under the headings of health care ethics (clinical ethics), research ethics (the ethical requirements when conducting research with human participants), and public health ethics (the broad public health principles and ethical considerations that should undergird all measures in public health). However, we will begin with a discussion of the formation and evolution of the Bioethics Society of the English-speaking Caribbean (BSEC), which brought lay persons and professionals together to develop bioethics across the entire Caribbean region.
The Bioethics Society of the English-speaking Caribbean (BSEC)
In 2005, a steering committee formulated ideas and objectives that became the Constitution for a bioethics body to consider and promote bioethical discussions amongst the English-speaking Caribbean countries. With its stated mission to increase knowledge and understanding of bioethics and thus make a significant contribution to development in human and animal health care, research, and policy making, the Bioethics Society of the English-speaking Caribbean was launched at the 2nd Research Ethics Conference hosted by the University of the West Indies in Mona, Jamaica, on May 19, 2006.
After local and regional coverage of the BSEC across the Caribbean, first through a press release and then through radio interviews and newspaper articles, the BSEC hosted its 1st Annual Bioethics Forum in May 2007 at the Annual Conference of the Caribbean Health Research Council in Montego Bay, Jamaica (8). Under the theme “Bioethics for the Caribbean,” the Forum presented the Caribbean’s journey into the field of bioethics, covering areas including “Ethics in Health Policy,” “Teaching Bioethics,” “Professionalism,” and “Research Ethics in the Caribbean.” Papers and oral presentations from the Forum later populated the first edition of the BSEC Newsletter: Bioethics Caribe: A Caribbean Society.
Members of the BSEC subsequently began working on various endeavors in the bioethical arena, including authoring a template manual for developing research ethics committees in the Caribbean and guidelines for research proposals, which were sent to the Chief Medical Officers for all the Caribbean countries. The availability of these documents on the BSEC website subsequently led to them being utilized by the Caribbean Public Health Agency (CARPHA) when it was compiling its Standard Operating Procedures in preparation for the launch of its Research Ethics Committee (REC)/Institutional Review Board (IRB) in 2014, as well as by other RECs/IRBs around the Caribbean. BSEC members also worked with UNESCO to form a National Bioethics Committee for Jamaica (NBCJ), which was eventually launched in 2009 (8).
Since then, the BSEC has conducted yearly Bioethics Forums, with themes such as “Bioethics and Patient Care,” ‘Bioethics Standards: People and the Environment,’ ‘Universal Access to Health,’ ‘Ethics, Equality, and Stigma,’ ‘Pain Management: Clinical, Legal, and Ethical Implications,’ ‘Bioethics in the Caribbean,’ ‘Ethical Issues in Public Health,’ ‘Clinical Ethics,’ ‘Updates and Dilemmas in General Practice,’ ‘Cannabis – Angel or Demon?,’ ‘Moral Distress on the Front Line: Covid-19 in the Caribbean,’ and ‘The Ethics of Artificial Intelligence and Robotics.’ These have been hosted in Grenada, Trinidad & Tobago, Guyana, Dominica, and Barbados. However, since Covid-19, the Annual Forums have been conducted using the Zoom online platform.
In 2015, interactive workshops were conducted by BSEC members for in-person participants at a BSEC Forum under the themes ‘Clinical Research & Research Ethics Committees,’ ‘IPad Application Assisting Advanced Directives,’ ‘Professionalism and Ethics in the OR & ICU,’ and ‘Clinical Ethics Algorithms.’
The Annual Bioethics Forum, newsletter, and website have allowed the BSEC to meet the objectives stated in their Constitution: 1) To provide a forum to exchange ideas and address problems in bioethics; 2) To promote the teaching of bioethics; and 3) To promote research and publication of ethics-based information. The BSEC targeted these objectives through other initiatives as well, such as a Student Essay Competition in which university undergraduate students wrote essays under the theme ‘Bioethics and Caribbean Health.’ The winning essay was published in the BSEC Newsletter and the author received a cash prize.
Furthermore, in keeping with the BSEC’s aim of promoting the teaching of bioethics, BSEC members were a part of the preparation and eventual May 2015 launch of the Caribbean Research Ethics Education Initiative (CREEi), which serves graduate students in lower- and middle-income countries of the Caribbean. This initiative will be discussed further in the Research Ethics section.
Health care ethics
Reflecting serious concerns about ethics in health care, by far the most frequently posed questions and discussions about topics that fall under the umbrella of clinical ethics occur in medical conferences and bioethics forums across the Caribbean (9, 10). This reflects an insufficient focus on education specific to health care ethics within the medical undergraduate curriculum and post-graduate medical training throughout the Caribbean (11, 12). Furthermore, much has been written regarding the importance of bioethics (13) and the neglect of “Ethics of Patient Care” as a topic in medical teaching and medical conferences. There is also a need for medical students and doctors to develop problem-solving skills and critical thinking in ethics simultaneously with clinical judgment and expertise, as these all affect clinical practice (14).
In addition, there was a lobby to establish clinical ethics committees within hospitals in the Caribbean. Health professionals, for their own occupational well-being, were urged to demand that administrators make ethics expertise and guidance available to them for consultation during their clinical work (15). Furthermore, there were insufficient clinical practice guidelines written to assist doctors in their work (16). However, these concerns are yet to be addressed as no hospital or health care setting within the Caribbean has created a clinical ethics committee or hired a clinical ethicist.
Despite this shortfall in the development and deployment of clinical ethics expertise to benefit health care across the Caribbean, progress has been made through individual ethicists providing their expertise in various settings (17). Moreover, ethics expertise from the Caribbean was incorporated into the Pan-American Health Organization (PAHO) Ethics Expert Panel on Zika. The panel developed clinical ethics guidelines for Latin America and the Caribbean regarding the 2016 outbreak of the Zika virus, which had presented a scientific and technological challenge as well as a major threat to public health (18).
Research ethics
It is now an international ethics requirement that all research with human participants must first undergo proper assessment and receive approval from an authorized REC/IRB before proceeding (19, 20). In the early 1990s, however, when the principles of bioethics began to take root in the Caribbean, an ethical review of proposals for research with human participants was only done on the campuses of the University of the West Indies, and this only occurred due to requirements from funders and sponsors of collaborative research that originated in the geographical North. Subsequently, an IRB was also formed at the WINDREF (Windward Islands Research and Education Foundation) Institute at St. George’s University in Grenada (21, 22).
Furthermore, while most countries of the geographical North have now adopted legal instruments to govern research with human participants, only one country in the CARPHA member states (Guyana) has fully done so (23). The Bahamas has developed legislation to cover stem cell research and treatment, which does not address other types of human subjects research within the country. The other 22 member states only have national or institutional RECs/IRBs to provide oversight of the research protocol approval processes (24).
To maximize the protection of human participants in research within the Caribbean requires a full human subjects protection framework, which would involve three very important components:
- Efficiently functioning, rigorous, and transparent RECs/IRBs
- An appropriate normative and regulatory framework
- Researchers and members of RECs/IRBs that are appropriate trained in research ethics (25)
Accordingly, in 2015, the ethicist for the Caribbean Public Health Agency (CARPHA) authored a position paper entitled “Human Subjects Research Regulation for the Caribbean.” Along with a cover letter to the Ministers of Health of the Caribbean community (COHSOD) and a draft for a Human Research Regulatory Act, the position paper was submitted for possible immediate adoption as policy, to be followed by enactment into appropriate legislation (3). The green paper was passed unanimously by the CARICOM Ministers of Health and sent to the CARICOM Headquarters in Guyana to be drafted into legislation. However, to date, nothing further has been heard of this matter.
Nevertheless, despite the unmet need for a robust research ethics system for the Caribbean, the landscape of research has changed over the last decade, with progress within the region into new fields of endeavor that require strong ethical evaluation (26, 27). The need for such an evaluation of research protocols was assisted by the 2016 creation of the Caribbean Research Ethics Education Initiative (CREEi), which was sponsored by an NIH Fogarty grant and supported by faculty from the Bioethics Department at St. George’s University, Grenada, and members of the Bioethics Society of the English-speaking Caribbean (BSEC). It later expanded to include the University of Querétaro, Mexico. From 2015 to 2018, the CREEi provided a 1-year post-graduate diploma in research ethics for eight graduates from lower- and middle-income countries in the English-speaking Caribbean; through additional funding it developed into a 2-year Master’s degree in Bioethics (specialization – research ethics) for four graduate students annually from the English-speaking Caribbean and 8 students from Central America during 2019–2023 (26, 28).
Furthermore, the Caribbean Public Health Agency has been providing research ethics training for RECs/IRBs within the region, and has developed and supported a Caribbean-wide network of RECs/IRBs (CANREC) whose purpose is to provide a sustainable infrastructure for RECs to promote, exchange, and cooperate in matters of research and research ethics (29). Research ethics graduates of the CREEi programme have been serving on some of these RECs/IRBs, providing them with the expertise of trained research ethicists.
Important research during the Covid-19 pandemic was facilitated through the research ethics expertise developed within the region over the past decade (28, 30), and the coordination between RECs/IRBs within the Caribbean under a cooperation accord developed and implemented by CANREC (28). Similar cooperation in research ethics oversight occurred between some of the IRBs in Central America and the Caribbean (31). Therefore, although the regulation of human subjects research is yet to occur across the Caribbean, vital progress has been made in the sensitization, education, and training of RECs/IRBs and research ethicists across the region.
Public health ethics
Ethical considerations in public health (public health ethics) involve the application of relevant ethical principles, considerations, and values to decision-making in public health. The development of public health policies and the conducting of public health work within communities should always be guided by the requisite ethical considerations (32). The importance of public health ethics was made vividly clear during the Covid-19 pandemic in several spheres of public health procedures and operations. However, whilst most countries in the Caribbean have robust public health systems, very few of the attendant public health officials and personnel have received any training in public health ethics.
The first and only workshop providing some training in public health ethics within the Caribbean was hosted in Guyana in 2016, with participants from several CARPHA member states. Later that year, a 10-week course structured within the curriculum of the CREEi provided formalized academic training in public health ethics. As a result, when graduates of the CREEi programme have returned to their respective places of work across the Caribbean, they are hopefully active in advising public health officials and sharing their expertise (33). Nevertheless, the challenge is to find the appropriate medium for sensitizing decision-makers and policymakers across the Caribbean to learn, embrace, and implement the principles of public health ethics, as well as promoting and supporting such training for all leaders and decision-making staff within Ministries of Health, public health offices, and health institutions. Ultimately, adequate sustained support as well as feedback regarding the ethical quality of decision-making and work outputs should be provided for all relevant officials and staff (34).
Conclusion
Bioethics education is important for developing the requisite ethical sensitivities in health care, research, and public health decision-making and service provision (35, 36). Ethical considerations should also underpin the development of policies within the health care setting and the guidance of health personnel (37). This treatise has chronicled the awareness, sensitization, and implementation of bioethical principles, values, and considerations across the Caribbean over time, and has highlighted both the achievements that have been made and the gaps that currently exist. These gaps will have to be addressed in order to give these countries some degree of parity and equity with the more industrialized countries in regard to ethical healthcare, research, and public health.
