Introduction to the Issues
Michael A. Gillette, Ph.D.

One of primary functions of this newsletter is to provide to its readers the opportunity to think about timely issues in bioethics from a philosophical perspective. In keeping with this goal, I used last month's newsletter to provide a brief discussion of the recent Supreme Court decision regarding physician assisted suicide. I would like to turn my attention this month to the extremely timely topic of genetic engineering.

While the prospect of cloning mammals (such as Dolly the sheep) is only one part of the larger issue of reproductive control, that recent scientific success has launched a major international debate that is sure to have far reaching implications. We cannot be lulled into a belief that the ethical implications of something as technologically fantastic as cloning, has no immediate impact on our daily personal and professional lives. The ability to clone individuals, or to selectively alter the genetic code of individuals in order to avoid genetic disease or create desirable traits, should be of serious concern to all of us. It has been suggested, however, that this activity will have its most profound impact on individuals with disabilities.

Prior to examining the set of ethical issues that are raised by genetic control, let me first explain in non-scientific terms what has taken place in three very recent cases.

The first ground breaking announcement came several months ago when scientists announced that they had successfully cloned a sheep. Although cloning techniques are not new, the success in cloning a large mammal created a serious concern that the procedure could be replicated for humans. In order to clone a particular individual (called the donor), technicians must first harvest genetic material from the nucleus of one of the donor's cells. The second step of the process is to take the genetic material out of a fertilized ovum from a recipient cell. In other words, scientists fertilize an egg of the proper species in a test tube (or Petri dish), and then remove the genetic material from that fertilized cell. The harvested donor genes are then inserted into the recipient cell's nucleus, and the fertilized cell is implanted in the uterus of a surrogate mother.

If all goes well, the egg will implant and the pregnancy will continue as normal. The child that is born at the end of gestation is then the genetic match of the donor. In simple terms, the offspring that is produced is the identical twin of the donor. They are, in genetic terms, identical twins even though their births may be separated by years.

The second scenario that I would like to present for consideration was announced last July by the same team that produced Dolly the cloned sheep. That team indicated that not only had they replicated their cloning experiment, but they had also been able to genetically alter the cloned sheep prior to transplanting the donor DNA. The scientists had created a sheep that generates a specific human protein. While it is not new to genetically alter animals in order to produce human proteins, this was the first time that the genetic tinkering had taken place prior to fertilization. This breakthrough seems to open the door to almost unlimited genetic engineering.

The third and final scenario that I would like to present is the case of Molly Nash. This young girl suffers from an hereditary disease known as Fanconi anemia. In order to treat this disease, doctors need a good match from a bone marrow donor, and no such match has been found. Molly's parents decided to have another child in order to provide a source for bone marrow. Mr. and Ms. Nash created several conceptuses (fertilized eggs) by in-vitro fertilization, and then tested those eggs to find the ones that did not carry the gene for the anemia and which were good bone marrow matches for their daughter Molly. They then implanted the selected eggs in Ms. Nash's uterus, and hope to gestate the perfect savior for their daughter.

Now, what about ethics? Normally, I provide a succinct discussion of an ethical issue, but this month it was necessary first to explain some of the technology that creates ethical issues brand new to the medical world. Already, many argue that the type of manipulation that the above cases involve has gone too far and that we must not engage in further genetic engineering. Others argue that we cannot ignore the powerful tool that these techniques provide, and that we must seize this opportunity to produce cures for harmful conditions and to enhance the species.

From an MH and MR perspective, serious issues arise. These issues fall into the following categories:

1) Arguments from nature or religion that maintain that we ought not to control the type of offspring that we generate, 2) Arguments from science that are based on fear that we will do inadvertent harm to our gene pool or directly to individuals by altering genes, 3) Arguments based on the social harms that will accrue to the individuals whom we create or alter by these incredible technological interventions, and 4) Arguments based on the harms that these technologies will create for those on whom they are not employed.

This last argument is of specific interest. Many are concerned that if we become able to create the 'perfect human' by technological means, our view of those who are not perfect will change drastically. How will we view those who have disease or disability if we find a way to eliminate those problems from future generations? Many fear that we will slide from avoiding the creation of people with specific problems to an elimination of those who already have those problems. The possible slippery slope in how we view individuals within society who have genetically avoidable problems creates a serious ethical issue for discussion. It is to this, and the other types of ethical issues listed above, that we will turn next month.