Читать книгу Turning Ideas into Research - Barbara Fawcett - Страница 28

In considering ethics and research we must first consider the theoretical, historical and contextual positioning of the ethical bases of decision-making. Ethical discourses underpin the moral basis of decision-making. Put very simply, moral decision-making falls into two broad categories of theories that lie at each end of a continuum. At one end of the continuum are theories that are based on looking at the consequences of the action – decision-making is guided by the idea that an action or decision is ‘good’ because of its effects, for example, the allocation of a limited resource may be based on the idea of the ‘greatest good for the greatest number’. This approach may be used in an emergency situation where resources are scarce, for example it underpins the decision-making in medical triage in disaster and medical emergencies. This of course means that some individuals may not receive treatment or access to the care or service; however, the decision can be justified on the basis of an ethical position about the consequences of the action.

At the other end of the continuum are ethical theories that are based on the intrinsic nature of the action – it is ‘good because of what it is’. Philosophers arguing this as the basis of decision-making might argue about the sanctity of human life at all costs. The eighteenth-century philosopher, Immanuel Kant, espoused an ethical perspective based on understandings of ‘duty’. This expresses our duty to each other as members of society.

Ethical philosophers can be located historically and contextually, reflecting the particular era in which their theories were developed. In doing so we understand that emphases and priorities of ethical positioning can be determined by the societal context of the day. For example, John Stuart Mill (1806–73) and Jeremy Bentham (1749–1832) espoused a utilitarian ethical approach, derivative of consequentialism (the greatest good for the greatest number). Utilitarianism privileges the benefits for the entire community over those of the individual. The mid- to late nineteenth century was an era of significant social reform, and this ethical approach to public discourse and provision helped make sense and give meaning to these social developments.

In contrast, in the postmodern era, feminist approaches, for example Gilligan (1982) and Noddings (1984), suggest that understandings of responsibility rather than duty, and relationships rather than principles, should be emphasized in ethical decision-making (Weber and Pockett, 2011a). These theorists posit that notions of ‘duty’ are in essence patriarchal and oppressive to women in that they place caring roles and relationships in the private rather than the public domain (Gray, 2010).

Another approach to ethical decision-making is based on the observance of four key principles that are so deeply understood in day-to-day relationships they are often taken for granted. The principles are: respect for autonomy; beneficence (or a duty to pursue the welfare of others); non-malfeasance (doing no harm); and justice (Beauchamp and Childress, 2001). A principles-based approach can be traced back to Hippocrates and the Hippocratic oath and its variations, taken by medical graduates to this day (Glannon, 2002). These four principles can also be identified as foundational elements of the codes of ethics of many other professions, such as social work (Banks, 2001; National Association of Social Workers, 2008; Australian Association of Social Workers, 2010; Weber and Pockett, 2011a).

The accepted hierarchy of these principles in Western societies places respect for autonomy and individuals’ right to make decisions about their circumstances as carrying primacy over the other three principles of beneficence, non-malfeasance and justice. Although generally considered to be universally accepted, this is a contextual assumption that may be challenged in societies where the order of primacy of these principles may not be the same, reflecting different values and beliefs.

Hugman (2005) states that as part of everyday life, moral positions are taken and decisions are made by everyone. Much of this is implicit: people may not be required to give a reasoned account of principles when they make a decision about something that might be ‘good’ or ‘bad’, ‘right’ or ‘wrong’. In the practice domain, ethics has underpinned the differentiation of ‘professions’ and professional practice from other occupations. Professions ascribe to codes of ethics that provide guides for professional ethical behaviour. Professional ethics is an extension of the ethics of everyday life but is different in that professionals must be able to analyse the ethical component of a situation logically, thus being explicit. The professional carries responsibility for this task and it cannot be delegated to others (Hugman, 2005).

Although aspiring to ‘do the right thing’ in all situations, the complexities and dilemmas of practice may result in the practitioner identifying more than one course of action that can be justified. It is in these situations, when limited assistance can be found in codes and guides, that practitioners’ understanding of values and ethics becomes crucial. Ethical knowledge must be interrogated critically, providing a way forward for practice. The ability to reason and articulate an ethical position drawing on ethical knowledge and principles remains one of the hallmarks of the professional.

This same knowledge is the basis of the ethical stance taken in research ethics. It is only in very recent times, since the Second World War, that research ethics has been based on codified approaches. Research ethics as a specific field of ethics emerged in 1947 with the publication of the Nuremberg Code (US Department of Health and Human Services, 1949). This was in response to the atrocities inflicted on prisoners of war and those in concentration camps in the name of scientific experiments during the war years. Further developments in the decades that followed have resulted in universally accepted codes for ethical research. These codes are continually reviewed and updated to keep pace with scientific and biomedical advances under the auspices of groups such as the World Health Organization and the World Medical Association through the Declaration of Helsinki (World Medical Association, 1964).

The United Nations has also located ethical research practice as a human rights issue. Article 7 of the International Covenant on Civil and Political Rights says:

No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his free consent to medical or scientific experimentation. (United Nations High Commission for Human Rights, 1966)

The history of these developments is mirrored in most countries in the Western world. Dodd and Epstein (2012) chronicle developments in the USA commencing with the Nuremberg trials in 1945, and several subsequent studies that were ‘sentinel’ in their failure to observe agreed ethical research principles, including human rights abuses, breaches of confidentiality and the absence of participant consent. Several of these studies have been well documented in the ethics literature, such as Milgram’s Obedience Study published in 1974, the Humphrey tearoom trade study published in 1970 and the Tuskegee Syphilis Study protocol revealed in 1972 but begun in 1932 (discussed in Habibis, 2010; Dodd and Epstein, 2012).

Looking at two of these studies to illustrate these failures, the Humphrey tearoom trade study was a covert, ethnographic study of casual homosexual encounters in which the researcher actively participated as a lookout for participants. The researcher noted car registration numbers and about a year later contacted these individuals to interview them about their socioeconomic position. In a review of the study, Habibis (2010: 95) states: ‘Humphrey’s study challenged negative stereotypes about gay men and so made an important contribution to the destigmatisation of homosexuality. However its violation of fundamental ethical principles, such as informed consent, compromised its validity within the academic community’.

The Tuskegee Syphilis Study was conducted over 40 years (ending in the 1970s) and involved African-American men infected with syphilis. This study did not involve fully informed consent and, although providing some access to free medical care, failed to inform participants of their disease and failed to provide full medical treatment. These examples involved research with participants who were in unequal and powerless relationships with the researchers and who were from vulnerable groups, neither recognized nor acknowledged, at the time the studies were undertaken. The development and implementation of more stringent ethical research codes of practice that formally prescribed the researcher–participant relationship was a means of addressing the exploitation and abuse of well-intentioned research that impinged on and ignored both human rights and the observance of key ethical principles.

This is not to say, however, that a reasoned approach to ethical decision-making in research prior to the emergence of these codes was not possible. For example, if we consider a principles-based approach to ethics founded on principles that are considered to be deeply ingrained in everyday thinking and life, there has always been a means of reasoning out an ethical course of action. Given this perspective, we will now turn to consider some contemporary debates regarding ethics and research.