Disclosing Genetic Information to Family Members: The Role of Empirical Ethics

Abstract

The familial and predictive nature of genetic information raises ethical issues regarding its disclosure to biological relatives. Arguments in the bioethics literature have centered on the right of the patient to privacy and confidentiality versus the right of family members to receive information that is clinically relevant to them. Empirical research has shown that although the need for disclosure within the family is rarely contested by patients, they are preoccupied by the ethical dimensions of their ‘genetic responsibility’, share a desire to protect relatives from the possible adverse effects of disclosure, and need guidance regarding what, why, to whom, when and how genetic information should be disclosed to mitigate adverse outcomes. Empirical ethics thus contributes to important insights and help reframe the debate to better address the lived experiences of patients, family members and healthcare professionals. Key Concepts: Disclosure of genetic information within the family raises particular ethical issues. The disclosure debate has been framed as a conflict between respect for autonomy (i.e. the duty of the clinician to respect patient confidentiality) and beneficence/‘do no harm’ (i.e. the clinician's duty to warn others). It is suggested that a patient's relatives have a right to know genetic information when it is clinically relevant to them. Most patients feel a genetic responsibility to inform family members in order to promote their health and well being. Empirical studies have shown that disclosure decisions are complex and influenced by numerous factors. Empirical ethics involves empirical studies which provide information that can frame ethical debates, enhance normative analysis and inform clinical practices.

The ambiguous nature of epigenetic responsibility

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To tell or not to tell: attitudes of transplant surgeons and transplant nephrologists regarding the disclosure of recipient information to living kidney donors

“…Empirical data about disclosure in the literature often focus on intrafamilial sharing of genetic information. The studies show that disclosures within families are not homogeneous and may depend not solely on biological relatedness, but rather on a variety of psychosocial and emotional factors as well as the quality of the relationship . This suggests that there may need to be some negotiation regarding content of disclosure with donor–recipient pairs.…”

Moving Towards Routine Non-Invasive Prenatal Testing (NIPT): Challenges Related to Women’s Autonomy

“…Moreover, it will increase the likelihood of incidental findings regarding health risks for family members, either the parents or other close relatives, who may not wish to know such risks [31]. While there are frameworks for dealing with such situations [60,61], this outcome would still add layers of challenges and stress in the management of pregnancy.…”