Feature: Major Ethical Dilemmas for the 21st Century
While medical advances approach the miraculous, a question intrudes: Who gets to play 'God'?
Floyd Stokes is dying at age 58. His heart bypass surgery from eight years ago is closing up. His heart is too weak to withstand major surgery again. A walk for him is not invigorating; it is life-threatening. But Floyd has been fortunate. He was admitted to trials for a radically new medical intervention, a form of gene therapy. He had a solution with billions of copies of a gene called veg-F injected into his heart. This gene is responsible for growing new blood vessels, which is what it did for Floyd's heart, right around the blocked areas of his arteries.
Floyd is back to work. --Time, Jan. 11, 1999
As a society we embrace such medical miracles. Our knowledge of genetics, the building blocks of life, has increased exponentially over the past twenty years. What we are beginning to witness now is the translation of that knowledge into effective medical technologies, such as the gene therapy that has prolonged Floyd's life. Floyd had his bypass surgery at age 50. That is a little early. Maybe he should have been more attentive to his diet. Those of us blessed with self- righteousness genes might be inclined to so judge. What is more likely, however, is that Floyd is among the five percent of Americans who were born with mutated versions of the gene that is supposed to get rid of the 'bad cholesterol' in our bloodstream.
Many will remember the marathon runner, Jim Fixx, from a couple decades ago. He died of a heart attack in his mid-forties. His father and brother met the same fate for the same reason. They all had an abnormal version of the gene that is supposed to get rid of that 'bad cholesterol.' The vast majority of medical disorders that afflict mankind today have a genetic component, which is why gene therapy is so important to the future of medicine.
There are more than 200 gene therapy clinical trials occurring today, but very few have had the sort of success enjoyed by Mr. Stokes. There are, for example, several gene therapy trials going on for individuals with cystic fibrosis, but these trials have only been minimally successful. Still, for individuals born with cystic fibrosis these trials are their only medical hope for now. But for possible persons who have not yet been conceived there are alternatives--something called pre-implantation genetic diagnosis [PGD] with in vitro fertilization. This was successfully demonstrated in 1993 and is now being rapidly disseminated as a reproductive option.
If a couple has undergone genetic testing, and if each individual is a carrier for a cystic fibrosis gene, that means there is a 25 percent chance that any child they have will have cystic fibrosis. That also means a 75 percent chance of a normal child. But many parents might not wish to take that risk. Some might wish to contend that it was morally irresponsible to take a risk like that. They do have the option of conceiving in the normal way, then genetically testing the fetus at 16 weeks into the pregnancy. If the fetus has two copies of the cystic fibrosis gene, they could elect to abort the fetus. But many will find that option ethically objectionable. They could also elect to use sperm or ova from donors who are known not to carry the cystic fibrosis gene, but that would mean their desire to have a child that was 'genetically their own' would be frustrated.
PGD is today their other alternative. If PGD is chosen, the woman would be given a drug that would allow her to produce multiple ova. They would be extracted and her husband's semen would fertilize them in a Petri dish. The result would be a dozen or more embryos that would be grown to the eight-cell stage over a couple days. At that point each embryo would be genetically analyzed. Those with two copies of the cystic fibrosis gene (25 percent) would be discarded. The parents could choose from among the remaining embryos several for implantation. The rest would be frozen for future possible use. The cost of achieving a successful pregnancy in this way would be about $40,000. The lifetime cost of cystic fibrosis would be many times that, not to mention the suffering endured by that child and a shortened life expectancy (age 20-40).
Should we then think of PGD as another medical miracle, another shining example of the best values and ideals of medicine and the promise of genetic engineering? Many will hesitate to answer this question affirmatively. Advocates of a 'right to life' position will strongly object on moral grounds to either storing or discarding the 'spare embryos' this technology produces. Advocates for disability groups object that the embryos discarded are 'disabled,' and that the social message from this technology is that disabled embryos (and disabled people) are worth less in our society than non-disabled embryos.
What should we conclude from these objections? Should we have a public policy that would ban the use of this technology? Or should we respect the privacy of such decisions and protect them from public scrutiny or public regulation?
There is another ethical issue associated with the cost of PGD. At $40,000, this intervention can be afforded by relatively few couples. Is it fair or compassionate that the children of less well off citizens in our society should have to endure shorter lives of severely diminished quality as a result of genetic disorders they could have been spared? If you think such an outcome is either unfair or lacking in compassion, would you argue that the costs of PGD should be paid for by some public program, such as Medicaid? If you endorse this idea, then what will you say to those right-to-life advocates who will very strenuously object to paying taxes to support a program they see as violating their deepest ethical commitments? This is only the beginning of the moral and political complexities attached to advancing genetic technologies.
The strongest objection that right-to-life advocates have to PGD is that so many embryos are discarded. But there is a potential genetic solution to that problem in the form of germline genetic engineering. This is not a capacity we currently have, but it is well within the range of scientific feasibility.
In short, what such engineering would involve would be taking an eight-cell embryo that had a gene associated with cystic fibrosis or Huntington's or Fragile-X Syndrome (the most common form of mental retardation) or increased susceptibility to breast cancer (the BRCA1 gene), deleting that gene from one or two cells of that embryo, and replacing it with a 'good copy' of the normal gene that is supposed to be there. We might see this as the ultimate form of micro-surgery. This looks like very high-tech therapeutic medicine. No embryos are discarded. This certainly appears to be ethically commendable. There are, however, moral objections that can be raised.
One objection will be that these sorts of genetic interventions represent 'playing God' in some deep and objectionable sense. Of course, much of medicine might be viewed in that way, especially if we have in mind the large array of death-forestalling interventions that are part of medicine today. But there are some differences that should not be overlooked. For example, medical efforts ordinarily only affect the person who is being treated. In the case of germline genetic therapies all of the descendants of the embryo will be affected by those genetic alterations.
An obvious response to this concern is that that outcome was exactly what was intended. Our objective was to delete a disease-generating gene from all the descendants of that embryo because that would be in the best interest of all those descendants, and would be more efficient than treating each individual.
