Duty and not Discretion?
Should a genetics or other health care professional (HCP) be under a duty to disclose genetic information to family members who may, or may not, be affected by a genetic disease? Our concern here is not the possible existence of a moral duty to act, but rather we want to ask, what would it mean for professionals and family members alike if a legal duty of disclosure was imposed? Most likely, any such duty would be a duty of care in negligence, that is, a duty to do what is reasonable to protect a person's interests. And if a duty of disclosure were imposed, it might well mean that a failure to seek out, find and inform third parties would leave HCPs open to actions for damages if harm resulted from non-disclosure, for example, if an opportunity for therapy or cure were lost.
The legal reality at present in the UK is that there is no such obligation to act towards unknown persons. An HCP's primary duty of care is towards her patient, which lies alongside her duty of confidence not to reveal personal information to any party outside their relationship. To impose a duty of disclosure to outside parties immediately places the HCP in a conflict situation vis-a-vis any patient who does not want personal information about their genetic disease revealed. How can an HCP simultaneously discharge a duty to disclose and a duty not to disclose? In the current climate, the duty of confidence is not absolute, and HCPs have a discretion to reveal data if it can further the public interest, such as preventing harm to third parties. But if the law were to impose a duty to disclose, it would largely remove professional judgment from the equation and damage the care relationship as a result.
A Duty of Disclosure: What would it mean?
Space does not permit a detailed account of the full ramifications of imposing a duty of disclosure. But it is sufficient to ask three simple questions to give a sense of the possible implications:
To whom would the duty be owed? Would it be merely to first degree relatives, or those most likely to be a risk (decided how)? What about spouses of family members who may wish to make more informed reproductive choices?
For what purposes should disclosure be made? To avoid physical harm? To ensure preparedness for future ill health? To facilitate reproductive choices?
How far should a health professional go in discharging her duty? Is it enough merely to inform the proband [person initially seeking treatment] of the familial nature of the disease and encourage intra-familial discussion, or should the HCP seek out family members? If so, for how long and at whose expense?
What If Disclosure Causes Harm Rather than Avoids It?
Few would deny that if a cure for a particular condition is available, then there is a strong case for disclosure. The reality, however, is that this is a rarity, and treatment options are far more limited, more equivocal in terms of costs and benefits, or simply not available. The consequences of telling are therefore complicated and unpredictable. In particular, there may be psychological consequences of being told something about yourself that cannot then be 'unknown' and about which you can do little or nothing. For those who would choose not to know, a vital interest may be thwarted by the very act of telling. But the problem with trying to protect such a choice is that there is no way to do so which actively involves the person in taking a meaningful, informed decision. The crude question, 'Do you want to know if you suffer from condition X?' immediately alerts the person that there is something to know, for the approach would be pointless otherwise. To approach the person and ask, therefore, necessarily compromises the interest in not knowing. Moreover, an appeal to personal autonomy - in the guise of informed choice - does not help us here. One of us (Graeme Laurie) has argued elsewhere, however, that the essential interest at stake is a privacy interest - an interest in being in a state of psychological separateness - which, prima facie, should be respected unless it can be shown that there is good reason to invade that psychological space.
In other words, the presumption should be one of non-disclosure unless there is very strong evidence to suggest that disclosure can bring a positive result, such as a successful therapy or cure. The challenge to this, of course, is that it is paternalistic to assume that someone will not want to know. But it is equally paternalistic to assume the opposite. This analysis merely suggests that the onus should be on those who would seek to disclose genetic information to people who have not sought it out to justify that action. If they cannot do so, then the psychological privacy of persons should be respected. To impose a duty of disclosure on health care professionals not only assumes that disclosure is necessarily a 'good thing', but it places those professionals in impossibly difficult conflict situations with their patients, to whom, first and foremost, they owe the utmost duty of respect.
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