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Journal news and reviews: February 2010

8 February 2010


The right not to know and preimplantation genetic diagnosis for Huntington’s disease.

Authors: Asscher, E; Koops, BJ.

This commentary piece considers the right not to know and what the authors feel is the lack of appreciation of this within policy making. The authors specify the impetus for the paper as

[…] the 2009 Dutch policy decision on embryo selection against Huntington’s disease. The government decided that in order to qualify for embryo selection by preimplantation genetic diagnosis (PGD), prospective parents have to be willing to find out their own genetics status.” (p30)

The paper then begins with a brief overview of Huntington’s disease, its autosomal dominant nature and the comparative lack of clinical options despite the availability of presymptomatic testing. An implication of such testing, they argue, is the ability to make informed reproductive decisions. One such decision is to use PGD.

The authors argue that one such procedure, “exclusion test”, minimises the probability of passing on the disease gene whilst also maintaining the parental right not to know their own genetic status by selecting against embryos on the basis of affected grandparent chromosomes. The remainder of the article considers the “right not to know” within this context.

The thrust of the argument forms around the individuals’ autonomy. The authors arguing that if one engages with a thick notion of autonomy, that is “the ability to choose one’s own life path, well informed but unencumbered by unnecessary or undesired knowledge” (p30), then knowledge of one’s own genetic status may serve to reduce one’s autonomy if it is not desired.

Whilst one can certainly acknowledge the deficits, the authors fail to acknowledge any benefits to the knowledge. For instance, they fail to acknowledge that partners or even the individual undergoing testing could change financial arrangements on the basis of a needs that could occur later in life. In pre-empting such criticisms the authors maintain that:

The choice not to know will prevent partners from knowing and being warned about the future in the sense of care duties, or alternatively from the relief in knowing that the spouse is not at risk from this particular disorder. Again, however, partners of those at risk from Huntington’s disease are already aware and are closely acquainted with the disease through other family members. In addition, a couple presenting for possible PGD with the exclusion test must have discussed this and will be counselled together; they will jointly balance the advantages and disadvantages of knowing.” (p32)

Yet this says nothing of the right to know, only that the partner is likely to know that there is a risk. The fact that they could know definitively could potentially have significant effects, not only in the care of the tested individual but also the care of future children. Countering this they argue:

However, this harm applies to all children with parents who may die young from a whole range of afflictions, not all genetic. Moreover, it is an argument against the reproductive decision itself rather than against particular forms of preimplantation diagnosis; it implies that any prospective parent who is a potential Huntington carrier should be tested, and presumably refrain from having children if the test is positive. That proposition, which carries some flavour of eugenics, is not seriously upheld by anyone in the debate.” (p32)

Yet this is not the argument at all. The argument is in relation to the knowledge of the test outcome, and not the reproductive decision. Indeed, the decision has already been taken by the parents who have presented for PGD to screen out embryos that carry the Huntington’s disease gene. There is no external influence on the parents reproductive decision, or at least no more than there would be even if the information was not revealed.

The authors then create further straw man arguments against knowing, such as the solidarity argument I.e. That in 50% of cases the embryo selection is unneccesary, or economic considerations that PGD is an expensive medical resource and a drain on a public health system. The argument being that if parents were required to know then possibly half of these could be avoided. This of course assumes that all parents will want to have children, screen embryos and not to know. The authors fail to consider what the realities of such might be, or even suggest any figures in relation to how many parents might consider such an option.

In making their final deliberations the authors argue that in half of the cases PGD is unnecesary. Against this they argue that the costs of not allowing a right not to know are:

These costs consist, first, of psychological harm of those parents who want to have disease-free children and choose to undergo the procedure and thus have to relinquish their right not to know. Second, other parents will decide to forego genetic diagnosis at all and will conceive unselected children; these children will have to face exactly the same dilemmas as their parents. In addition, 50% of these children will carry the gene for Huntington’s disease and thus become seriously ill and die in their third or fourth decade of life. Third, some of the prospective parents may decide against having genetically related children in order to preserve their right not to know.” (p33)

Two of these arguments are largely constructed in this section and not discussed elsewhere in the article and so are offered with little discussion. Indeed the third of these examples, the decision against genetically related children, not only implies that this is a harm (to the prospective parents?) but also that there may be a positive right to have children. The right to found a family is a negative right, in so much as it is the right to not be prevented, but it in no way confers a positive right for others to assist in the creation of a family. This argument, of the harms of not having genetically related children, is presented very late in the appear and would certainly have benefited from exploration within the body of the text.

Furthermore whilst the presentation of the exclusion test as an “ingenious and practical answer” (p33) is lauded by the authors, the test itself is discussed in little detail, particularly in relation to the implicit knowledge generated by the grandparent chromosomes. Neither is the exclusion test compared to the “non-disclosure” test option (whereby medical practitioners know the result, yet do not divulge the information). In terms of the patient both may be argued to be indistinct and the right not to know is preserved in both. The implications, and potential benefits, lie in the ethical benefits to the practitioner and, as the authors acknowledge, the “practical and ethical issues” (p31) that arise.

Thus for this author the paper had a single core argument that would have benefited from a discussion of differing perspective. Indeed many of the arguments presented against the right not to know appeared to be weak, presenting little substantial debate. Whilst the discussion itself is worthy one, more detailed analysis, and comparison with other methods that preserve the right not to know, would have been beneficial.

Comments and thoughts welcome as always.


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