Timothy Caulfield is at the Health Law Institute at the University of Alberta, Canada.

Genetic information is inherently familial. As such, a person's decision to have a genetic test might raise privacy, confidentiality and stigmatization issues for their entire family or for the cultural group to which they belong. Indeed, the familial nature of genetic information has been identified as one of the characteristics that makes genetic information different from other forms of health information. This biological reality can cause a variety of unique consent dilemmas (Wadman 2000). For example, what if one family member chooses to forego genetic testing, whereas another wants to know his or her genetic risks? The autonomous decision by one family member will inevitably affect that of the other.

As a result, it has been suggested that biological relatives should participate in the consent process in clinical and research settings. For example, Canada's primary research ethics policy, the Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans, suggests that, in the context of genetic research, “free and informed consent shall also involve [the participation of biological relatives] as far as is practical and possible.”

Given the potential medical and social ramifications of the disclosure of genetic information, it is understandable why this 'family consent' approach has emerged. A 'familial' trait can, for instance, affect the granting of insurance and, rightly or not, individual perceptions of risk and health. However, the idea of 'family consent' conflicts with well-established legal norms, most notably the idea of autonomous consent. In fact, in many jurisdictions, existing legal norms make it very difficult to adopt a 'family consent' approach.

Consent law is a manifestation of Western culture's deep respect for the principle of autonomy. Although exceptions exist (such as in health care emergencies), consent law has continued to reinforce the right and necessity of individual consent before the provision of any health care procedure or participation in a research protocol. From the law's perspective, the interests of third parties, even family members, are not considered. In fact, in most jurisdictions, current consent law suggests that health care providers should follow the informed decision of the competent patient regardless of third-party wishes to the contrary.

As noted above, there are sound reasons for health care providers and researchers to encourage a more inclusive approach to consent. But, unless there is a radical shift away from the autonomy-driven conception of legal consent, clinicians and researchers might find themselves in a legal/ethical bind. On the one hand, they are being asked to include family members in the consent process, while on the other hand, the law focuses on individual consent. Without changes to the overall consent process, it will remain the purview of the individual, not the family.