The Existing Tradition

One of the reasons it is easy to slip between the phenotypic and genotypic senses of prevention in discussing genetic medicine's goals is that the desire to bear children free from specific genetic diseases can and often does provide a rationale for prospective parents' interest in the specialty's services. But that does not pose a professional ethical problem for clinical geneticists: whether the intervention is genetic counseling, adult carrier screening, intrauterine diagnosis, pre-implantation screening, providers of genetic services can help parents achieve their geno-preventive goal in good conscience, because it falls within the sphere of reproductive choices which parents are free to make in a tolerant society. Even the sharpest critics of genotypic prevention as a professional and public policy will agree that individual decisions about these interventions are inseparable enough from core personal values and beliefs to warrant the same respect we give to other fundamental freedoms (of religion, for example)(Saxton; Fine and Asch).

However, it is not necessary to conflate the patients' goals with the professional goals of genetic medicine in order to display respect for reproductive autonomy. In doing so, advocates of increased screening blur a distinction that clinical geneticists providing more traditional genetic service have worked hard to clarify: the distinction between the profession's mission in providing its services and the personal interests of their clients (Botkin).

Clinical geneticists argue that their professional goals in offering reproductive genetic testing and counseling services have little to do with the content of the autonomous reproductive choices that their clients make. Their mission is to treat a special class of reproductive health problems their clients face as prospective parents: the reproductive planning problems posed by their risk of having a child with a genetic disease (NSGC; Bartels). The advocates of this ethos assert that "the fundamental value of genetic screening and counseling is their ability to enhance the opportunities for individuals to obtain information about their personal health and child-bearing risks and to make autonomous and non-coerced choices based on that information," not the elimination of genetic disease (President's Commission). From this perspective, the geneticists' goals are not so much "preventive" as directly therapeutic: the reproductive planning problems they address are already fulminant when their clients engage their services, and their treatment consists of giving them the information, counseling, and options they need to address their problems in terms of their own values and beliefs (Kessler).

This approach to defining the mission of reproductive clinical genetics has several important features for our purposes. The first is its emphasis on the practitioner's primary professional obligations to his or her presenting clients— usually prospective parents—rather than with the next generation. Thus, practitioners are warned that:

Counselors may find themselves pulled by an allegiance to the unborn child—whose well-being is, after all, the ultimate object of their concern as well as the motivating interest of the parents. As understandable as this concern may be, in the end it must give way to the duty owed to the counselee— the parents (Capron, p. 334).

Secondly, since in practice reproductive health largely boils down to the ability to fulfill one's procreative ambitions, the geneticists' treatment goals can only really be accomplished within the context of their patients' own life plans and beliefs. Because the content and consequences of the reproductive decisions that the geneticist helps facilitate reflect personal moral judgments made within the sphere of the patients' procreative liberty, they are understood to be beyond the geneticists' professional domain of concern. As a consequence, geneticists are expected to be strictly non-directive in the counseling they provide, and to help their clients to make their own value judgments about the relative burden of the disease their children may inherit. The practical result of this orientation is a strongly client-centered ethos that, historically, anticipated the rise of patient autonomy in the ethics of other medical specialties by twenty years.

In part, this tradition has historical roots in the reaction of postwar medical geneticists to the excesses of their eugenic predecessors. However, it also reflects an important strategy for dealing with the predictive and moral uncertainties of the reproductive decisions that geneticists' help their clients make (Juengst, 1989). The tradition is often inaccurately accused of prescribing "value-neutrality" and criticized accordingly (Caplan), but it would be more accurate to label it as "value-sensitive," since it instructs clinical geneticists to discern and work with their clients' values, rather than be blind to them.

The consequence of this client-centered, non-directive ethos is that genetic medicine has no need to adopt geno-preventive goals in order to explain or justify the interventions it performs on behalf of its clients. In fact, it is free to repudiate "public policy intended to change the genetic makeup of the populations" (Council of Regional Genetics Networks), and thereby to distance itself from the liabilities that the geno-preventive concept brings to the profession. One recent statement of this ethos is worth citing at length, because of the ways it clearly displays its roots in the field's concern with the hazards of espousing geno-preventive goals for their services:

Reproductive genetic services must ultimately serve personal—not public—interests, in improving the overall reproductive lives of women. Whatever societal gains might be realized through the eugenic use of reproductive genetic services should be heavily outweighed by the personal needs of women and their families. The ideals of self-determination in family matters and respect for individual differences, ideal that lie behind the client-centered view of reproductive genetic services, are jeopardized whenever the primary goal of these services becomes the prevention of the birth of individuals with a disorder or a disability. To the extent that voluntary reproductive genetic services are evaluated even indirectly in eugenic terms, societal pressures have the potential to threaten the important interests of individual women and their families. (Thomson et al., p. 1161)

Of course, there are still plenty of ethical tensions within this model of genetic medicine (e.g. cf. Bartels). For example, as more can be done to address the phenotypic problems associated with fetal genotypes identified through genetic testing, it becomes harder to interpret prenatal testing as solely aimed at addressing a parental reproductive health problem. In these cases, the fetus emerges as a presenting patient for the medical geneticist, with its own claims to professional allegiance. Similarly, to the extent to which the profession fails to distinquish between their commitment to a non-directive counseling style and their professional obligation to establish the limits of their services, concerns about a laissez faire, commercialized, "consumer eugenics" will remain. Genetic medicine also has to grapple with the fact that, unless the profession is willing to use genotypic preventive measures of success, it may find its reproductive testing and counseling services excluded from cost-conscious healthcare coverage plans as relative luxuries.

Moreover, despite its prominence in the rhetoric of the field, it is also true that this client-centered ethos does not command universal allegiance amongst human geneticists: in fact, 59% of geneticists surveyed do still endorse the "reduction in the number of carriers of genetic disorders" as a professional goal for their field (Wertz and Fletcher). Nevertheless, on the whole, rejecting genotypic prevention in favor of focusing on the interests of the presenting patient serves its advocates well in clinical genetics. By keeping the specialty's loyalties with the particular patients at hand, and its professional prescriptions within the context of those patients' own values and goals, it inoculates the field against infection by the dangerous agendas of negative eugenics.

The bad news for proponents of population genetic screening, of course, is that returning to the client-centered ethos of medical genetics does mean that they will have to forego their appeals to genotypic prevention in making their case. Whether or not genetic screening has any promise for "purifying the human gene pool" should remain totally irrelevant to its acceptance as a public health tool. Given the political, professional and social dangers of going down the eugenic road, any short-term benefits of doing so could carry a very heavy price for all concerned.

Anxiety and Depression 101

Anxiety and Depression 101

Everything you ever wanted to know about. We have been discussing depression and anxiety and how different information that is out on the market only seems to target one particular cure for these two common conditions that seem to walk hand in hand.

Get My Free Ebook

Post a comment