'Designer Disability': Newsmaker Interviews With Richard Alastair Preiss, FRCS, MBChB, and Ellie E. Rosenfeld, MPH

Laurie Barclay, MD

October 15, 2002

Oct. 16, 2002 — Editor's Note: A deaf lesbian couple in the U.S. have deliberately created a deaf child by selecting as a sperm donor a deaf friend with five generations of deafness in his family, according to a report in the Oct. 5 issue of the British Medical Journal. Both members of the couple are mental health professionals who view their deafness and communication by signing not as a disability, but as defining their unique cultural identity. In an Education and Debate article, Julian Savulescu, director of the Oxford Centre for Applied Ethics in the U.K., argues that couples with a disability should have the right to use prenatal genetic testing of their fetus or in vitro fertilization and preimplantation genetic diagnosis to deliberately select a child with that disability, whether it be deafness, dwarfism, or intellectual disability. "As rational people, we should all form our own ideas about what is the best life," he concludes. "But to know what is the good life and impose this on others is at best overconfidence — at worst, arrogance."

Of five electronic responses to this article published by the British Medical Journal, four disagreed with this viewpoint. Medscape's Laurie Barclay interviews two of these letter authors to help determine what doctors should know about this ethical dilemma. Richard Alastair Preiss, FRCS, MBChB, a research fellow in orthopaedics at the Tayside University Hospital NHS Trust in the U.K., is hearing impaired, and is currently researching the benefits of botulinum toxin in treating focal spasticity in cerebral palsy. Ellen E. Rosenfeld, MPH, was formerly a special education teacher working with the profoundly deaf and is now writing a doctoral thesis in public health and philosophy at the University of Adelaide in South Australia on the bioethical implications of prenatal testing for multifactorial conditions.

Medscape: How do you feel about the issue of "designer babies" in general, in terms of public health and/or moral, philosophical, or ethical issues?

Preiss: The issue of designer babies is an uncomfortable example of how massive advances in medicine have left crucial ethical considerations behind. On the one extreme, consider the genetic disease, osteogenesis imperfecta, caused by a defective gene encoding type 1 collagen. Much agreement exists that gene therapy for babies with this disease would be laudable, and stem cell therapy and gene therapy are on the immediate horizon for clinical use in humans. On the other extreme, two female deaf mental health professionals recently used genetic manipulation on a less sophisticated level, by employing a male deaf gentleman friend as a sperm donor, in order to procure a deaf baby, thus prompting the phrase "designer disability." Between these two extremes are many important diseases in which a genetic basis has been implicated such as primary osteoarthritis or familial breast cancer. Even in this grey zone, the differences between the diseases we could target are profound — cancer kills, osteoarthritis does not.

As genetics advances, the number of conditions amenable to genetic manipulation will grow exponentially. So where do we draw the line as to where the benefits of genetic manipulation outweigh the risks? Where do we stop playing doctor and start playing God? I believe the answer lies in distinguishing between true disease and, what I term, traits. Working in orthopaedics, I believe that osteoarthritis is a disease, albeit nonlethal and non-limb threatening. Theoretically, therefore, it would constitute a relatively weak indication for gene therapy, bearing in mind the little we currently know of the risks. Nevertheless, I would accept an osteoarthritic joint as an indication for locally administered gene therapy (following appropriate trials). Ultimately, the distinction between disease and trait is too fundamental for the medical profession to decide alone, and the question deserves urgent consideration by society at large.

One example of the complexity of today's ethical questions is that of an Australian couple who recently received permission to perform tissue-typing on IVF-created embryos. Thus they could select an appropriate sibling to match the tissue-type of their five-year-old daughter, who has Fanconi's anemia. The goal was that the sibling's cord blood would provide treatment for this congenital anemia. Fanconi's anemia is (obviously) a disease and I would support the theoretical involvement of genetic manipulation to assist the sufferer. However, my facile decision only scratches at the surface of the ethical considerations. For if one takes this precedent further, one must ask what might happen to the sibling if errors occurred in the tissue-typing? Would it be ethical to demand an organ such as a kidney from this sibling? And what of the remaining embryos — do they constitute life (created, to be summarily discarded)? Do the discarded embryos have a right to be born?

Rosenfeld: I feel that "designer babies" is a media catch phrase that misleads the public into thinking that pregnancies are "designable" currently in first-world nations, which is not the case. Additionally, this phrase is a portmanteau concept applied to many different conception scenarios. If the eugenic "designing" or selection of children based on gender and on prenatal testing for disability, as is the practice in the People's Republic of China, is what we deem "designer babies," then I believe that practice would be considered morally anathema to most of us.

We currently test prenatally for a range of monogenic and congenital conditions, one outcome of which is that parents autonomously choose elective termination, frequently in a situation in which the condition, such as Huntington's disease, is severe and untreatable. These choices are made with deliberation, pre- and post-test counseling, and sometimes a great deal of heartache for parents, whose choices are premised on weighing the benefits and harms to both the child and themselves. The use of pre-implantation genetic diagnosis, in which there is embryo selection for nonaffected re-implantation, may minimize the angst of this, but the phrase "designer babies" could hardly be ascribed to reproductive choices people make about extremely debilitating conditions with no ameliorative treatments.

If "designer babies" means cloning or speculative splicing of gene traits or germ-line gene therapy, in what Caulfield refers to as "a consumerist culture," then as Marcy Darnovsky states, "marketing the ability to specify our children's appearance and abilities encourages a grotesque consumerist mentality towards children...and threatens our solidarity and support for people with
disabilities." It is also prefaced on an acceptance of the hegemony of genetic determinism, ignoring a plethora of public health variables that ensure a child's physical and emotional welfare and progress, such as good nutrition, loving parenting, sound education, etc.

Medscape: Are attempts to select for traits which society perceives as desirable any better than attempts to select for traits appealing only to the parents, or at least to a much narrower societal segment?

Preiss: It is my belief that the medical profession should concern itself with disease and the alleviation of suffering as opposed to the "traits" which constitute our individual identity. (My apology if this annoys cosmetic surgeons.) To use sophisticated genetic techniques to merely alter our God-given uniqueness suggests arrogance on the part of the individual and intolerance on the part of society. The medical profession must guard against any such trend. The distinction between disease and unwanted traits requires further deliberation and definition prior to widespread availability of gene therapy. I repeat, society needs to decide for itself what constitutes disease or disability, and what constitutes a "trait." Then we can draw a line in the sand.

On the other hand, any individual retains the right of reproductive freedom, ie, freedom to procreate with whomsoever they wish. Should this freedom lend itself to an unsophisticated, unassisted attempt to procure certain traits in the offspring (such as height/gender/skin color), then so be it. Whilst I feel that a specific desire to secure disabled offspring contravenes the spirit of this reproductive freedom, that is my opinion, and the basic right of reproductive freedom remains inviolate.

Rosenfeld: There seems no consenus on "desirable trait" nor on "traits severe enough to negate a life worth living" at any societal level, therefore one cannot do the comparison. There will in all probability be a sector of the community for whom the notion of "controlling/proscribing" genomics/genetics in their progeny is appealing.

Medscape: Please comment on the validity of autonomy in reproductive decision-making? Can we fairly balance parental freedoms with their responsibilities to their child and to society, and if so, how?

Preiss: Autonomy in reproductive decision-making remains an important tenet of ethics. Some of our discomfort at this particular case may be engendered by the fact that this child (and his deafness) is not the direct product of a loving couple, but the product of a "friendship." In other words, fewer people would have qualms with the incidental procurement of a deaf child from the loving relationship of a deaf couple. We would be wrong to allow this emotional reflex to cloud our ethical judgment.

The two deaf women acted within existing ethical boundaries in choosing a deaf father. They have autonomy in their reproductive decision-making. The ethical question is: was it acceptable to deliberately seek to create a deaf child? It needs to be emphasized that the deliberate "selection" of the deaf child does not mean that a hearing embryo was robbed of its sense of hearing. The embryo was already preprogrammed to be deaf. Therefore, the only remaining consideration is as to whether its life is worth living or not. We live in a logocentric world and a deaf person will remain at a definite disadvantage as regards employment opportunities, income, and safety. The decision to specifically select deaf offspring is clearly not in keeping with wanting the best options for one's child. However, I can scarcely imagine that anyone would suggest that a deaf person's life is not worth living. Therefore, although making the case makes me uncomfortable, I cannot say that the actions were unethical. In contrast, the refusal of the parents to augment the child's residual hearing constitutes unethical behavior. This decision lies outside the boundaries of "parental freedom" and clearly limits the child's future.

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