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Jennifer Lahl

The Center for Bioethics and Culture
Posted September 22, 2003

The Ethics of Genetic Testing

As we celebrate the 50th anniversary of DNA, the news buzzes with all of the promise and hype that the cracking of the genetic code holds for the human race. Contained inside our DNA are approximately 30,000 to 40,000 genes that provide unique information about each individual human being. From the color of our hair, to our sex, our genetic health or information about our risk for such diseases as breast cancer, Parkinson’s disease and cystic fibrosis, the DNA mystery has been solved and “the book of life”, we are told, will provide the answers to the many diseases for which medicine has yet to find a cure.

The hopes and promises of the Human Genome Project (HGP) are vast. And for those of us that acknowledge the sanctity of human life, we applaud Dr. Francis Collins, the Director of the HGP, view that the primary purpose of the HGP is to find cures for diseases. Similar to the life giving, healing ministry of Jesus, we have a great interest in the potential cures that might be found through understanding the mysteries of our genetic information. But, we also have great cause for concern as we understand all too well the heart of man. DNA pioneer, Dr. James Watson, has been so bold as to say that if stupidity is a disease found to have a genetic cause then we should work to abolish low IQs. And all the more for shock, he has suggested that we should intentionally create pretty girls by understanding how genetics factor into our physical appearance![1] Never before have the dangers been so great toward marginalizing people. Just exactly how will the HGP put people at risk and what exactly should be the ethical guidelines for choosing to consent to genetic testing? Let me outline a few real and potential situations that raise ethical concerns in the light of genetic testing.

• Women not diagnosed with infertility are using IVF techniques to create embryos, which are then tested before implantation to pick the ‘good’ embryos. This technique, called pre-implantation genetic testing is generally chosen for the woman that does not want to be put in a position of deciding for or against abortion if the child is determined to be unhealthy.
• Couples are using genetic testing to determine if a pregnancy will result in a healthy child. If the child, for example, tests positive for Down’s syndrome, the child is aborted so the parents can try again to have a healthy child. This technique is called prenatal genetic testing.
• Couples are using genetic testing on embryos to create a genetically matched child to be born for the purpose of providing a bone marrow transplant for an already sick child in need of a donor. Embryos created that aren’t a genetic match are discarded. This can be done via either pre-implantation or prenatal genetic testing.
• Adults are opting to be tested for genetic diseases that currently have no treatment available, such as Parkinson’s disease or Alzheimer’s disease.
• Insurance companies may want to encourage the abortion of sick and disabled fetuses or refuse to pay for healthcare needs of unhealthy children once they are born.
• Genetic privacy abuses might discriminate against people in receiving employment, insurance benefits and other benefits.
• Societal taboos will develop against intentionally bringing sick children into the world when given the choice to have healthy children. This will weigh heavily on the desires of parents and the obligation of parents to make better babies.
• Conversely, in an age of scarce resources in health care, older people with the genetic predisposition for certain diseases might be encouraged to submit to euthanasia before becoming a burden on society.

Because our ability to test for disease far exceeds our abilities to treat such diseases we can see that there will be a natural movement toward increased abortions and more demand for legalized euthanasia. The BBC News, in their article, “Human Genome finally complete” states, “Identifying genes can now be done in days instead of years. But for medicine, the real challenge is to move from knowing which malfunctioning gene or genes cause a particular condition to knowing how to do something about it.”[2] Also, we need to be reminded that genetic testing is not infallible, nor should we be permitted to take a reductionistic view of our genetic material, making the argument that we are no more than the sum total of our DNA.

When genetic testing of any kind is made available to us by our physicians, we must first stop and ask:

1. Why does my doctor want to do this test? Is there a family history or something in my physical exam that is prompting this test?
2. Is there a cure or treatment that is available to me if the test results are positive.
3. What will I do with the data this test provides me with, realizing that the test result may be a false positive or a false negative? Data is not necessarily knowledge or information.

Wisdom and knowledge both are vitally important as we discern how best to apply what we have learned from the human genome. The role of medicine should be to heal, to cure, and to treat, but never to kill. We should exercise great caution alongside our hope of the promises that genetic discovery allows.

Reprinted by permission by Jennifer Lahl

[1] Shaoni Bhattacharya, “Stupidity should be cured, says DNA discoverer”, NewScientist.com, 28 February, 2003.
[2] BBC News, Science/Nature April 21, 2003

Jennifer Lahl R.N., B.S.N., M.A. is Founder of the Center for Bioethics and Culture and Executive Director of the Bay Area Center for Bioethics and Culture, and travels extensively speaking to groups on the issue of bioethics. The Center holds periodic conferences bringing some of the best thinkers in the bioethics field together to educate and shape public policy. Contact:

www.thecbc.org; Jennifer.Lahl@thecbc.org.