Somatic Cell Gene Therapy
The prospect of somatic cell gene therapy appears to be a logical extension of current techniques for treating disease. Some analysts think gene therapy may become as routine and pervasive as immunizations or antibiotics. But others have argued that the associated high costs, along with improvements in alternative (typically drug) treatments, will make such therapy untenable.
On this forecast respondents were split. While significant numbers of both groups (around 40%) expressed uncertainty about its ultimate success, a somewhat higher proportion (47% of German and 42% of other European scientists) were optimistic.
The possibility of gene therapy raises ethical issues regarding unprecedented decisions that would have to be made, thereby challenging societys ability to make informed and reasoned choices about whether and how to proceed withdevelopment and use.5
When asked whether the objective of in utero gene therapy would be ethically appropriate if only serious diseases were targeted and the risk-benefit ratios for both mother and fetus were acceptable, a large and like-minded majority of respondents (79% of Germans, 82% of non-Germans) said yes.
Only 6% and 5% respectively viewed this goal as unacceptable. However, somatic cell gene therapy, whether for existing children and adults or for embryos and fetuses, was considered more or less appropriate depending upon the potential applications to which it would be put (Figure 2).
The most legitimate candidates for modification, and also the most agreement among researchers about these speculative uses (there was little or no difference between German and other European respondents), involved treating serious diseases or disordersto cure a life-threatening disease or remedy mental retardation.
On the other end of the spectrum, few respondents were open to nonhealth-related enhancement, such as to eliminate a propensity for baldness (8% of Germans and 11% of non-Germans), improve intelligence (6% and 13% respectively), or decrease sleep dependence (4% and 8%). One respondent made it perfectly clear: Tampering with nonmedical traits is wrong.
The middle ground involved less serious physical and mental disabilities as well as a moral disorderall of which could benefit from improvement, and for which there was, with one exception, only minority approval. The middle ground also produced, again, the most disparity: correcting a learning disorder, for which a remarkable 29 percentage points fewer Germans than other European respondents, half as many, checked ethically acceptable; eliminating a propensity for obesity (a 14 percentage point difference in the same direction); and reducing a propensity for aggression (12 percentage point difference).
It appears that cures/treatments versus improvements/enhancements is a particularly significant distinction for German researchers.
One question in the survey posed the choice outright: how morally acceptable is the use of genetic techniques to improve human capabilities rather than solely to cure disease in prospective children?
Clear majorities (82% and 73% respectively) said such enhancement was unacceptable. In fact, most (56% and 47% respectively) checked not at all acceptable rather than not generally acceptable. Only 14% and 17% viewed enhancement as acceptable to at least some degree.
Historically, definitions of eugenics typically have assumed an agent that attempted to interfere with reproductive processes to produce a coerced, desired goal. Newer viewpoints have tried to tone down the negative connotations and separate out acceptable forms of eugenics that focus on producing better human offspring.
But present concerns point to the dangers arising from what have been called in the literature back-door or homemade and soft or laissez-faire eugenics in which families, not the state, voluntarily set about choosing the type of children they wantfamily eugenics rather than population eugenics, as one respondent to the survey put it.
Respondents brought up other important questions that will require examination and discussion as well: of cost and of equality of access to this potential technology. Who will benefit from it?
They also referred to enhancing capabilities by improving educational and social environments instead of altering nature: We should cherish human diversity and underscore differences in talents and aim at improving nurture for enhancement.
The human genetics debate in Germany and other German-speaking countries is especially complicated. Philosophically, German ethical thinking is said to derive from general principles of reason and a Kantian emphasis on duty rather than pleasure and happiness.6
And the German constitution of 1949 is unusual in that it rules explicitly that the dignity of man is untouchable. Historically, Germany is haunted by barbarous acts of human instrumentalization, including eugenics, euthanasia, and nonvoluntary medical experiments on peoplecommitted during the Nazi regime.7