Conclusion Context Placebos and Nocebos

It should now be clear that the major issue, the major concern, the major variable in all of these discussions about the ethics and social consequences of genetic disclosure is not whether information is disclosed, but the character of the social milieu into which that disclosure is disseminated. And the width and band of that social milieu is critical, from nation to culture to region to family unit. One family environment (or nation-state) may be safe and supportive for a child with Down syndrome, another quite hostile. It is not so much the disclosure that should occupy the focus of our analysis, but the context of that disclosure. As we have seen, under the highly commendable and politically safe banner of prospectively bringing greater health, molecular biologists "assume" that what they are doing will ultimately come down on the side of increasing public health (Hood 1992; Gilbert 1992).

However, the technology currently available in human molecular genetics is far more superior at diagnostics than at therapeutic interventions, and the prospects for the next decade all point to an increasing gap between diagnostics and therapeutics. To put it crisply, we are far better able to tell people what problems they are likely to encounter with genetic disorders than we are to intervene to reduce their health problems. In such a circumstance, "genetic disclosure" is primarily information provided about a condition that is strongly influenced by the genes, or a prospective future condition (even for potential offspring)—and in the circumstances described in this chapter, the issue of "nocebo effect" inevitably hovers over such disclosure.

The idea of placebo has only been in the lexicon of Western medicine for about fifty years. Before 1945, the term was not in general use, and could not be found in the title of an article for any medical journal (Weil 1988). However, it is now well established that if the subject believes that she or he has taken a medicine that might increase his or her health, under certain conditions that belief can alter conditions in the body:

Placebos can relieve severe postoperative pain, induce sleep or mental alertness, bring about dramatic remissions in both symptoms and objective signs of chronic disease, initiate the rejection of warts and other abnormal growths, and so forth. They can equally elicit all the undesired consequences of the treatment of drugs, including nausea, headaches, skin rashes, hives and more serious allergic reactions, damage to organs, and addictions. In this case, they are sometimes called "nocebos" since their "effects" are noxious rather than pleasing [italics mine] (Weil 1988,209).

A genetic diagnosis of the kind described in this paper has all the elements needed for a "nocebo effect." Following Andrew Weil, one can certainly offer the quite plausible hypothesis that there will sometimes be a "nocebo effect" if the subject believes that there is "no hope" or no chance of a cure. As we have seen from findings for the research reported above, some family members "give up" hope for their children once they have been given a diagnosis of a genetic disorder, with an attendant spiral in a negative direction.6

One of the most promising areas for future research on the social consequences of genetic disclosure is in this arena: Is there a "nocebo effect" to the disclosure of a genetic predisposition, or carrier status, or disclosure of late-onset conditions? This is basically uncharted territory, and yet with the expanding diagnostic power of human molecular genetics, it is where we should focus more and more of our attention in the coming decades. We can begin to set up research programs to address this problem now, or we can trudge forward with the belief that someday, somehow, despite the increasing gap between what we can know and what we can heal, therapeutic intervention will make such research programs unnecessary.

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