The fact that the genetics community has, without supporting evidence of harms, adopted, supported, and adhered to its strong policies on testing children invites speculation. Recent work in cognitive psychology on unwanted and invisible influences on judgment provides important insight into this peculiar phenomenon. A series of papers by Timothy D. Wilson and Daniel T. Gilbert and colleagues offer a framework for making sense of the genetics community’s position (18 – 22). Although they take circumstances such as predicted reactions to football games, elections, and tenure decision as their examples, their points are relevant to any situation where decisions are based on predicted reactions.
Through a number of studies, Wilson, Gilbert and others demonstrate that judgments of future mental states are contaminated by various distortions (18 – 22). People systematically focus primarily on the negative reactions to a future event while largely ignoring other outcomes (focalism), including their ability to generate satisfaction with whatever outcomes come to pass, and they overpredict the duration of their negative emotional reaction to future events (durability bias) and hence reach unjustified and slanted conclusions about their own emotional responses to future events (affective forecasting) and to those of others (18 – 22). The robustness of these findings suggests that everyone is vulnerable to affective forecasting biases, including patients, parents of patients, and clinical geneticists.
Those who developed the policies on genetic testing of children for adult-onset conditions appear to have behaved just as Wilson and Gilbert would have predicted. That is, they probably focused their attention primarily on the possible negative emotional reactions following disclosure of testing results to a child or a family, and overlooked the advantageous outcomes, as well as people’s natural ability eventually to reconstruct the outcome as something good. These normal cognitive distortions may have also led the drafters to over-predict the duration of the emotional reaction of children and their families and, in turn, inclined them toward untenable policy conclusions.
C. Unappreciated Benefits
The genetics community has asserted that genetic testing for adult-onset diseases provides no benefit to the tested child. But they may have overlooked possible benefits, and also some harms that could be averted by testing. As I have defined my topic, there is currently no beneficial medical treatment available for the conditions we are considering. Yet, other, non-medical advantages can be expected to follow from genetic testing and a variety of harms could be avoided by providing the tests.
There is accumulating evidence that uncertainty is worse than even bad news, and that the stress of uncertainty correlates with negative effects on the psycho-neuro-endocrine-immune system (23 – 26). For example, the vast majority of those tested for HD find the uncertainty of not knowing their genetic status to be more burdensome than receiving either a negative or positive test result (23 – 26). Similarly, children who have cancer cope better with specific and frank disclosure of information than with non-disclosure and uncertainty (26). From that perspective, almost everyone who is tested can benefit, at least by being relieved of uncertainty. Furthermore, in the examples listed above, 50 – 75% of those tested would also get the good news that they are unaffected. I take those odds alone to be an overwhelming reason for testing children.
Furthermore, other pediatric literature and policies acknowledge that deceiving or withholding information from children can be harmful (23 – 26). In fact, the American Academy of Pediatrics (AAP) has issued policies recommending that children be informed by the time that they enter school about their being adopted (27) and about their being HIV+(28). For example, the AAP position statement on adoption recommends that, Even before a child understands the words “adoption,” “adopted,” and “biological family” or “birth family,” it is important that these words be a part of a family’s natural conversation.… Families should be discouraged from “waiting until just the right minute” to tell children that they were adopted, because this may leave children feeling betrayed and wondering what else their parents may have hidden from them. Children may also learn information from peers or neighbors, which may impair the trust between parent(s) and child. It is important to share with even very young children their adoption story.… An honest approach in the discussion...will give a child permission to ask questions or to make statements about adoption and at the same time will take away the veil of secrecy that often implies that being adopted is a negative condition. Similarly, the AAP has endorsed a policy of informing children that they are dying (29). And in a similar vein, authors such as McGee et al. (30) and Haimes (31) have argued that children should be told that they were created with gamete donation as soon as they are able to understand. These positions are based on compelling reasons that are also applicable to the case of genetic testing of children for adult onset diseases.
Generalizing from what we already know about these analogous situations, we can expect that withholding testing can be harmful. We can also surmise that testing early and informing children of test results can prevent problems that are likely to arise from delaying testing until the children are old enough and mature enough to make a decision for themselves. There are some general considerations for testing and informing children that apply to many situations:
- When all of the adults involved know that a child is at risk, non-disclosure creates an environment of tension and discomfort that the child is likely to pick up and translate into a sense of insecurity. Learning the information early on is likely to avoid these problems.
- Information becomes part of identity. When a child learns personal genetic information early in life, it can be absorbed and accommodated into identity. When the information is disclosed later in life, it can be jarring to identity and very hard to internalize and accept.
- Putting off the testing decision until late adolescence compels the child to live through many years of uncertainty. It also pushes off the testing decision and its consequences into adolescence, compounding the trauma of those years.
Additional considerations for the parents and for the child are especially relevant to genetic testing for adult-onset conditions. Delays in learning a child’s genetic status prolong parents’ uncertainty and anxiety. From surveys of parents, we know that they identify worries about when and how to tell a child and anguish about the aftermath of the conversation as a significant burden. Delays in testing increase their dread of having to speak about the matter with their child, and that makes the hurdle of latter disclosure seem more and more formidable. The prolonged period without testing also delays their learning how to speak frankly about the genetic condition. When parents begin speaking about it when the child is very young, they have the chance to become comfortable with the discussions as the child matures.
Putting off testing until the child reaches late adolescence can also be expected to have a negative impact on the child. The delay amplifies the dread and increases the hurdles for the child who anticipates developing a familial disease, and these magnified impediments set the stage for a crisis when the information is ultimately disclosed. Refusing testing to children also delays the child’s learning to speak about her/his condition and accommodating to it. Avoiding these formidable and likely harms to parents, children, and their relationships amounts to a significant benefit.
Evidence from adult testing for HD provides a further consideration that is relevant to assessing the benefits of early testing. Only 10 – 15% of atrisk adults opt for Huntington’s disease genetic testing. Studies of those who were tested provide relevant and important data. Some untoward results followed reports of both good and bad news. People were upset, but over time, most did come to accept the information and most were glad that they were no longer in ignorance. People also behaved as affective forecasting would have predicted. Because people tend to exaggerate the impact of bad news, many of those who did not know their HD status before testing had acted as if they would develop the disease, and they had made choices about reproduction, finances, education, and career in that light. In other words, they had made decisions and foregone opportunities as if they were certain to develop the disease. I take this as a very significant and avoidable harm. If it can be averted for 50 – 75% of the children who are at risk for inheriting a serious genetic disease, it is important to amend policy in that light.
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