For ethicists, the routinisation of genetics raises an important challenge: Can the potential benefits associated with the routinisation of genetic information (eg, reduction in misplaced genetic determinism and exceptionalism) be realised without a corresponding loss in the special ethical protections and clinical practices developed largely because of privileging genetic information in medical research and care?
An answer to this challenge may be found in the ongoing culturally specific routinisation of genetic information taking place outside the professional precincts of biomedicine. The public interpretations have occurred as members of different communities encounter genetics in everyday life and extend their existing world views to “make sense” of it. This sense‐making effort, like most extensions of the existing cultural logic to novel problems, is rarely explicit.22
If we conceptualise bioethics as comprising a culturally specific community, then the problem becomes one of how to re‐interpret the innovations of “genetic ethics” in the context of the broader discipline of bioethics in a more explicit manner that anticipates and reflects various options available. How, for example, do pretest and post‐test counselling or other efforts to reduce psychosocial harms to affected people make sense with respect to non‐genetic information and multifactorial frames of reference for understanding the aetiologies of complex disease? The sense that is made in the broader context will differ from the original meaning in the more specialised context of genetics. Nonetheless, the contrast with a genetic frame of reference can tell us a great deal about the new challenges presented by multifactorial and multidisciplinary research and care.
Special cases, such as the one made for genetics, often make useful contrasts for considering the more complicated matter of general cases. The era of exceptional treatment of HIV infection, for example, highlighted several ways in which standards for the protection of medical confidentiality were more problematic than widely believed.6
By making the ethical trade‐offs of regarding genetic information as either unique or a routine element of medical research and care more explicit, we have the potential for more informed self‐reflection about the ethics of integrative approaches to medicine that do not privilege any one type of information above the others.
Although much attention has been paid to what makes genetic information potentially different from other kinds of information, and the implications of those differences for ethics, little consideration has been given to the ethical implications of working with multiple kinds of information. The special case of genetics can serve as a useful measure of the costs and benefits of various approaches for obtaining and communicating individual and aggregate biomedical information. Genetics can also serve as an example of the extent to which the risks and benefits of one kind of information may be overstated or interpreted in isolation from other kinds of data. Perhaps the most interesting insight from such an explicit comparison is the possibility that the ethical challenges associated with the study and care of people with rare diseases differ in some important respects from those associated with the study and care of people with common complex diseases for which multiple kinds of information are required to produce a research or clinical finding. This general line of thought preserves genetic exceptionalism for some limited purposes (including continued ethical innovation), but also uses the contrast with exceptionalism to characterise a central, relatively little‐explored issue in the larger domain—that is, the problem of working with multiple kinds of information that contribute to disease and health status.
Dealing with culturally specific views on genetics presents a different challenge: How do we accommodate diverse views on the ethical challenges posed by genetics, and yet facilitate a cross‐cultural consensus that rejects the use of biological information to define social identities?
This is more difficult because it goes far beyond the scope of the bioethics community itself. Perhaps the best bioethicists can do is to continue to develop review processes mandating the participation of members of communities affected by the information that biomedical activities generate as researchers and practitioners plan the studies and the provision of care from which that information flows.23
Taking account of the differing cultural perspectives of study participants is an area in which ethics researchers in genetics have been particularly innovative, one that has interesting potential links with parallel work carried out in community‐based participatory research, which has become another specialised venue for ethical innovation.24
Reducing risks of group stigmatisation and discrimination will require the development of broad cross‐cultural consensus on the social relevance of purported associations between genetic and other biomedical information and social identities. The association of biomedical data with social identities is less risky when differences in genetic frequencies or disease incidences are viewed as consequences of the ways in which people are grouped rather than as biological confirmations of perceived differences between those groups. Although bioethicists probably cannot alter the larger sociocultural processes by which different audiences interpret genetic and other biomedical information, they can help researchers in framing research findings in ways that draw attention to existing health disparities between groups and in designing protocols that limit opportunities for others to define those groups on the basis of perceived biological differences.
Many of the innovations in the ethics of genetic research and medicine may be interpreted as attempts to anticipate and reduce public concerns about genetic information, particularly where those concerns reflect differing group perspectives because of the ways in which that information is routinised in existing cultural frameworks.25
The discourse of bioethics, however, has tended to avoid engaging diverse populations in efforts to integrate alternative frameworks that members of those publics use to interpret the relevance of biomedical information in their everyday lives. That bioethical exceptionalism, however, similar to genetic exceptionalism, may be appropriate in only certain limited, special cases, such as the acute moral dilemmas that are often used as illustrations in the teaching of medical ethics. To make sense of more common encounters with biomedical practices and information, however, including finding guidance for incorporating diverse perspectives on health‐related information into general standards for research and clinical ethics, we may have to routinise bioethics in the larger context of other culturally specific frameworks.