What are ethical considerations?

6.3 As IP 26 noted, ethics are

an accumulation of values and principles that address questions of what is good or bad in human affairs. Ethics searches for reasons for acting or refraining from acting; for approving or not approving conduct; for believing or denying something about virtuous or vicious conduct or good or evil rules.^[1]

6.4 Ethical considerations can be addressed at individual and at societal levels. The way that individuals are affected by the conduct of others merits ethical consideration. The effects on a person of being informed that his father died of Huntington’s disease (and that, therefore, there is a fifty percent chance that he has inherited the genetic mutation) can be personally and profoundly harmful. The risk of harm to that person becomes an essential ethical consideration in deciding what information to disclose and how to disclose it. That risk will need to be balanced against the ethical interests in respecting the autonomy of the person affected, and their choice about whether to know or not.

6.5 Revealing genetic information has important ethical implications for individuals as family members. They are vulnerable to the effects of the information on their self-perception and disclosure of information on familial relationships and sense of privacy. A grandfather’s discovery that he carries the genetic mutation that impairs his grandson may change and harm his perception of himself and his relationships with his descendants. He may also be concerned about how the privacy of this information will be protected and that the information not lead to differential treatment of himself or his descendants. In these ways, individual interests are related to family and societal interests.

6.6 The way that a society governs the disclosure of such information and the extent to which its laws or other regulatory frameworks control what can be disclosed, express the way that a society balances personal risks and interests against other family, community or societal risks and interests. To prohibit disclosure of genetic information, in order to prevent the kind of harm that a person at risk of Huntington’s disease might suffer, may not adequately reflect the needs of others. From balancing ethical considerations, flexible solutions may be derived that accommodate the interests of individuals and the needs of families and society.

6.7 In this way, ethical considerations reflect the kind of society in which we live or would choose to live. As DP 66 explained:

While the term ‘ethics’ is used in a wide variety of senses, its meaning consistently relates to an ‘ethos’ or ‘way of life.’^[2]

6.8 The way of life of a society or community can be reflected in the laws it makes.^[3] The basis for those laws can be described as the ethos of the society so that they express that society’s ethics. Indeed, the answers to some of the questions posed in this Inquiry are already provided by existing laws. For example, privacy laws prohibit the collection, use or disclosure of genetic information without consent, except in limited circumstances. Similarly, anti-discrimination laws prohibit the reliance on genetic information in ways that are unfair.

6.9 It can be argued that ethics expresses the fundamental considerations that inform any societal decisions. Ethics brings together and integrates relevant interests, individual, familial, community and societal. Ethics can have an integrative function in the context of biotechnology:

Ethical judgements are not stand-alone judgements, rather they are integrative, holistic, or ‘all things considered’ judgements. The Canadian moral theorist Thomas Hurka put this point well in a book on the ethics of global warming:

An ethical judgement about climate policy is not just one judgement among many, to be weighed against economic, political, and other judgements in deciding how, all things considered, to act. It is itself an all-things-considered judgement, which takes account of economic and other factors. If a climate policy is right, it is simply right; if it is ethically wrong, it is wrong, period.

That is, in making an ethical judgement about global warming or biotechnology, ‘ethics’ is not one factor to be considered alongside other factors, like legal, scientific, or economic factors. Rather a sound ethical judgement involves an integration of all the relevant factors. Since expert judgement is relevant in the recognition and understanding of relevant factors and their interplay, combined expertise is essential. In this joint endeavour, what ethicists can contribute on the basis of the ethical theory and work in applied ethics is help in understanding the complex ways in which integrative judgements can be made, criticised and justified.^[4]

6.10 The language in which ethics is expressed includes two distinct types of statements. Ethics contains statement about what is good or bad, what ought or ought not be done and the grounds for those assertions. For instance, researchers ought, ethically, to seek consent from people to use their genetic information in research because doing so respects their autonomy and freedom to choose. Or, on the other hand, researchers should be free to use coded genetic information in research without consent because that will enable more information to be used and better research to be conducted. As a result, all members of society, including those whose information is used, will benefit. These statements are often called normative statements—they are statements about how, and why, people should behave.

6.11 Ethics also contains statements about the kinds of justifications that are used in normative statements. For instance, respecting a person’s autonomy is a principle of ‘principlist ethics’. Acting to achieve the best outcome is, on the other hand, a justification based on consequences and not on principles. These justifications are referred to as ‘consequentialist ethics’. Much of the content of this chapter uses normative statements. The chapter describes the range of ethical considerations that are likely to be drawn on in making and justifying decisions about genetic information. The regulatory responses recommended in this Report to protect genetic information reflect a balance among these considerations.