TY - JOUR
AU - Bridgeman, Jo
AB - Roy Gilbar examines the status of the family in law and bioethics in relation to genetic information selected because it is central to our ‘self-image and identity’ (p. 231). The nature of such information means that we may wish it to be kept confidential, yet it has numerous implications for our relatives. Diagnostic genetic testing is undertaken prior to the development of any symptoms in order to make predictions of the likelihood of developing an inherited disease or to provide information about carrier status (p. 49). A number of studies are discussed which show that the consequences of finding out about an inherited condition or status as a carrier are not predictable: anxiety and mental distress can be the result of either a positive or a negative test. However, Roy Gilbar argues that the discovery of genetic information almost inevitably has a profound effect upon family members either because of the implications for their own health status or as a result of their emotional attachment to, and caring responsibilities for, the patient (pp. 50–59). That medical information, for example discovery of HIV status, diagnosis of cancer, Alzheimer's or liver disease, likewise affects self-image and identity and impacts upon our family members, raises the important question of the reach of the arguments made within this book beyond genetic information, decision-making and consultations, to healthcare more generally. The author identifies the interests that both patients and their families [defined to include both blood relatives and the social family (pp. 65–69)] have surrounding genetic information. First, both patients and their family members may be considered to have an interest in receiving information about their susceptibility to genetic disease to enable them to make informed decisions about their own care or future life plans. Depending upon the circumstances, for example, if the disease is incurable or the chances of the disease developing unascertainable, there may be an interest in not knowing. Both patients and their relatives may have an interest in the protection of the confidentiality of information, arising perhaps from concerns about the impact of the information upon family members, and an interest in disclosing the information in order to secure support from family members or out of a sense of responsibility to them (pp. 69–76). This results in two tensions surrounding genetic information that are central to the author's thesis and to the argument that the interests of family members should be given greater respect in law and bioethics: first, as between the patient's autonomy and confidentiality interests and the interests of family members in having the information; secondly, where the patient wishes to disclose the information whilst family members may wish not to know. The author's argument is that a patient-centred approach within law and ethics, informed by liberal individualism, fails to reflect medical practice and the views of both doctors and patients with regard to the involvement of family members in providing care and supporting the patient. It is argued that ‘values such as solidarity, moral responsibility, care and commitment should be taken into account with liberal conceptions of autonomy and justice when the interests of patients and those of their relatives are considered’ (p. 3). Consequently, the approach advocated for law and ethics is one which combines principles from liberalism with those from communitarianism and the feminist ethic of care in decision-making about genetic information. Both communitarianism and the feminist ethic of care respond to liberalism's focus upon the individual. Both recognise the connectedness of individuals: for communitarianism, arising from social relationships in communities including the family and for the feminist ethic of care, arising from relationships of care. In general terms, communitarianism understands individual identity as in part formed by communities, stresses the importance of maintaining social relationships, of having moral responsibilities to others and accepting limits upon individual freedom in the interests of the community (pp. 28–30). As explained, a concern within feminist work to both respect individual freedom and recognise the centrality of relationships has resulted in the development of the concept of relational autonomy. As developed by Nedelsky,1 this involves recognition that: the capacity of the individual to find his or her autonomy can develop only in the context of social relationships with others who cultivate this capacity; and that the ‘content’ of personal autonomy is intelligible through reference to shared social norms and values (p. 31). Autonomy is here understood not as a fixed status, but a shifting and variable condition dependent upon the circumstances, and as a state that needs to be fostered. The concept of relational autonomy employed is a less sophisticated one, which recognises ‘the right of the patient to choose, but also appreciates the significant impact of social relationships when it is exercised’ (p. 33)—a concept of relational autonomy that would appear to owe more to communitarian rather than feminist principles. Consideration is also given to principles from the feminist ethic of care which, Roy Gilbar rightly explains, commences from an understanding of individuals as connected and seeking to fulfil caring responsibilities in order to maintain valued relationships. As with relational autonomy, these principles are employed to secure recognition of the ‘care, commitment and support’ within family relationships (p. 202). What communitarian theories, relational autonomy and the feminist ethic of care have in common is that they are all approaches which respond to critiques of, and perceived limitations within, the principles of liberalism. There are differences between them, for example, communitarianism's acceptance of community values and the question of the place of autonomy in caring. Attempting to draw principles from all three approaches risks failing to fully engage with the richness of the analytical position of each in addressing the question of the status of family members with respect to genetic information. The legal and ethical principles Roy Gilbar subjects to critique are those of negligence and confidentiality. The question of whether patients will be liable to relatives for failure to disclose to them genetic information about themselves raises complex questions of duty, breach and causation. Roy Gilbar's short analysis of the question of whether patients owe a duty of care to their relatives does not appear to support the conclusion that the court will uphold claims brought by family members against the patient alleging that disclosure of genetic information could have prevented a risk of serious harm (p. 83). However, there is a fuller examination of the complexities of the question of whether doctors would be held to owe a duty to their patient's relative who suffered physical, psychological or economic harm as a consequence of disclosure or non-disclosure of information about their patient. Roy Gilbar's critique of the current legal principles is that, being patient-centred, the circumstances in which doctors will be considered to have assumed responsibilities establishing a proximate relationship with third parties will be limited. The author develops the concept of ‘awareness’, which he suggests has begun to be employed in cases of physical harm, to fulfil the requirements of the proximate relationship in cases of physical (pp. 104–107), psychiatric (pp. 104–106) and economic (p. 111) harm. The argument is that ‘doctors are legally proximate to relatives not because they assume responsibility to them or undertake to treat them, but because they are aware of the effect their conduct has on them as identifiable third parties’ (p.111). This, it is suggested, is more consistent with an approach which locates the patient within the family. Consideration is given to the legal principles of confidentiality in order to analyse the extent of the right to know and whether there exists a right not to know. Whilst the current law justifies disclosure of confidential information only in order to prevent serious physical harm, a ‘qualified principle of confidentiality’ is advocated which distinguishes between relatives and others (pp. 144–147). This qualified principle requires consideration to be given to the nature of the relationship between the patient and family members when deciding whether to disclose information. The book concludes by presenting a model which accepts that patients and their doctors should retain discretion to decide whether to disclose genetic information to family members, whilst arguing that in doing so, consideration should be given to the effect that disclosure or non-disclosure to any particular family member will have on their relationships. This would necessitate discussion between doctor and patient about the latter's relationships with family members covering such ground as the patient's sources of and need for, family support, the ways in which family members may respond to the information and how the patient may feel about the subsequent decisions of family members in relation to, for example, antenatal testing or termination of pregnancy. It is suggested that this ‘social dimension’ should also form part of the ‘qualified rule of medical confidentiality’ which would justify disclosure against the wishes of the patient not only to prevent serious physical harm, but if necessary, for example, to secure the support of family members in the future treatment of the patient. Likewise, relational factors, it is argued, could justify a decision not to disclose (p. 221–231). Three examples are given where the approach advocated might not ‘furnish a comprehensive solution’ but, through the deliberative process advocated, a decision can be reached. The first example is a pregnant woman, presently separated from her husband, who has discovered a history of Huntington's disease in her husband's family. She wants a prenatal test, whilst her husband does not want to know his genetic status. The second example is a woman with breast cancer who has had a test to identify whether she is a breast cancer-associated gene carrier, but does not want to tell her teenage daughters if she is. The third example given is a mother of a child with Duchenne's muscular dystrophy who discovers that she is a carrier, but is refusing to tell her pregnant sister (p. 226). Roy Gilbar suggests that the approach he advocates would require that ‘the interests of family members should be recognised’, without meaning that ‘the personal choice of the patient should not be respected’ (p. 202). The deliberative process model in which discussion between doctor and patient explores the interests of family members does recognise their interests in, and the effects of, genetic information to a greater degree than the current approach within law and ethics founded upon liberal individualism. Yet, respecting patient choice whilst recognising family members' interests does indicate its continuing dominance. The book provides an interesting and original exploration of the application of communitarian and feminist theoretical principles to healthcare law. This reader remains unsure as to how successfully the principles of liberalism can be blended with those of communitarianism and ethic of care feminism. Each of the three approaches would provide a different focus for the discussion between doctor and patient and different conclusions in the three examples given above. The focus of the book is upon the patient and their family members such that the interesting, wider, question of the public interest in individual genetic information is acknowledged, with the example of a policy of screening all newborn babies for cystic fibrosis, but not explored. Whilst providing a critique of the prevailing individualism within the law and bioethical approaches to genetic information, the persuasive critique and the interesting employment of liberal, communitarian and feminist theories leave the reader to reflect upon whether the analysis undertaken has wider application to the field of healthcare law. One of the two examples used to both start and end the book, that of the parents of Robert Powell who suffered psychiatric harm upon discovery of the cover-up over the negligent diagnosis of their son, suggests that it may well have application to the status of the family in law and bioethics more generally.21 J. Nedelsky, ‘Reconceiving Autonomy: Sources, Thoughts and Possibilities’ (1989) 1 Yale Journal of Law and Feminism, 7–36.2 Powell v. Boldaz (1998) Lloyd's Rep Med 116. © The Author [2007]. Published by Oxford University Press; all rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org
TI - The Status of the Family in Law and Bioethics: The Genetic Context
JF - Medical Law Review
DO - 10.1093/medlaw/fwl023
DA - 2007-04-01
UR - https://www.deepdyve.com/lp/oxford-university-press/the-status-of-the-family-in-law-and-bioethics-the-genetic-context-0LCGACf3qw
SP - 144
EP - 147
VL - 15
IS - 1
DP - DeepDyve
ER -