In an important sense, individuals may sometimes have a moral duty to obtain information about their genes; in another sense, health-care professionals should go along with patients who do not want to know their genetic status. Because health professionals should not impose information on patients who declare their desire to avoid the information, some people speak of a "right not to know." That phrase is, however, unfortunate because it promotes significant misunderstanding of the ethical issues involved.
Having a duty to do something means that I do not have a right to avoid doing it. When I have a duty to do something, we say that I should do it, I ought to do it, or I must do it. With respect to genetic information, if there is a moral sense in which I should inform myself about my genes, then I have no moral right to remain in ignorance unless some more pressing obligation is overriding.
According to widely accepted views of ethics, the core of a person's moral responsibility is to thoughtfully consider what to do and make decisions with care. To do that, people have a duty to find out critically relevant information (including genetic information) because responsible decisions turn on the facts of the situation. So when personal genetic information could make a significant difference in the choices that have to be made, an individual has a moral duty to pursue that information. Choosing to remain in ignorance when the relevant information is easy to obtain and when the decision can lead to significant harm to others or even oneself is irresponsible and reckless. Like any other self-indulgent or imprudent decision, it is blameworthy and the person who acts in voluntary ignorance is culpable for any unfortunate outcomes that result. Therefore, it is appropriate to say that no one has a moral right to genetic ignorance (Rhodes, 1998).
Yet, because it is hard to know enough about another person's situation to make an accurate judgment about what that person should do, health professionals should be nondirective in relation to their patients. It is easy to imagine that particular details about their situation make it reasonable for some patients to refuse genetic testing. For example, patients could have well-grounded concerns about the security of the information, or legitimate worries about career implications, or be vulnerable to significant changes in their health and life insurance status. A person's emotional fragility at a particular time could also make getting the information too much to bear. The likelihood of such consequences or the burden of such considerations could tip the scales of an individual evaluation in favor of avoiding genetic information. A person's religious convictions could rule out options that would otherwise be reasonable choices (e.g., abortion). Patients are in a better situation to assess their personal circumstances than are health professionals, so the decision should be left with them (Rhodes, 2000).
The person who acts in voluntary ignorance is culpable for any unfortunate outcomes that result.Therefore,it is appropriate to say that no one has a moral right to genetic ignorance.
Because people need information to make sound decisions, people generally have a moral duty to be informed about their own genetic liabilities when that information will be relevant to their choices. Hence, they have no "right not to know" their genetic status, and they have a duty to be tested. Nevertheless, health professionals should avoid pressing information on patients who do not want to know for at least two reasons: (1) Individual patients need to trust that healthcare professionals will accept their values. Without that trust patients can be legitimately anxious that medical professionals will impose their own view of what is best and do just what the patient counts as worst. In such an environment, patients are less likely to submit to medical tests and treatments. Promoting medicine's requisite trust, therefore, requires professionals to abide by the decisions of patients. (2) In the context of the current complex and inadequate U.S. health insurance system, people can have legitimate anxiety about increased costs or loss of insurance and reasonable fears about employability and stigmatization. In this environment, pursuing personal genetic information may compromise one's ability to fulfill other obligations. So although patients have no "right not to know" what is in their genes, health professionals have no right to disclose unwanted information.
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