This is a lecture I put together as part of a Medical Ethics course that I am teaching at Bowling Green State University this summer. It is about ethical issues related to genetic screening and counseling, and prenatal genetic diagnosis.

1. The Ethics of Genetic Control Medical Ethics Online Eli Weber, Instructor Summer 2011

2. Lecture Goals Clarify the difference between genetic screening, genetic counseling, and prenatal genetic diagnosis, as well as the ethical issues for each. Consider arguments for and against the moral permissibility of selectively aborting a fetus with a genetic disease. Assess whether there is a difference between gene therapy and genetic enhancement, such that we can prohibit one but not the other.

3. Genetic Screening Usually targeted at newborns just after they are born. Sometimes performed on adults, and has historically been performed on target populations for whom a disease is prevalent. Ethical issues include whether such tests should be mandatory, how to protect those screened against discrimination, and what supportive services ought to accompany a screening program.

4. Genetic Counseling Parents are screened either prior to attempting to conceive, or shortly after conception Goal is to inform parents of the risks that they run if they decide to conceive Ethical issues include whether parents have a moral obligation to either not have children, or pursue alternative means when there is a high risk of genetic disease for their potential fetus. Parents are often unsure of what to do with this information, once they have it.

5. Prenatal Genetic Diagnosis Occurs after conception, involves slightly more invasive methods in order to test whether a fetus is a carrier of a specific disease gene Ethical complications are numerous, and include: -risks of the testing procedures themselves -whether presence of a disease gene makes an abortion morally permissible -what genetic traits can legitimately be tested for -whether public funds should be used to pay for prenatal genetic diagnosis

6. A Further Complication For those who are opposed to selective abortion for disease genes, genetic counseling seems like a good alternative -But genetic counseling can be very expensive. Who should pay for this? -If it’s discovered that a couple has a high likelihood of having a Tay-Sachs baby (for example), should the public assist them in paying for reproductive services to prevent this outcome?

7. A Further Complication -For those who think the destruction of embryos is always morally wrong, reproductive services will not be viewed as an acceptable alternative, since this involves creating, and usually destroying, unused embryos. If this is your view, what should a couple in this position do? Remember, adoption costs tens of thousands of dollars as well.

8. Selective Abortions When an embryo is discovered to have a serious genetic defect, like Tay-Sachs, the decision to abort the child is called a “selective abortion.” Imagine a case of a child who, after prenatal diagnosis, is discovered to have the gene for a serious genetic disease. What arguments might justify a selective abortion?

9. Arguments for Selective Abortions Difficult to talk in general terms. Two attempts at an argument for general permissibility Parents are obligated to give their children the best opportunity for a good life that they can. This is inconsistent with having a genetic disease. Because the parents are ultimately responsible for their child’s care, they alone can legitimately decide whether they want to take on caring for a child with a genetic disease.

10. Arguments Against Selective Abortion (Excluding for now the view that abortion is always wrong, no matter the reasons for it.) Some genetic diseases are worse than others. In some cases, its possible that the person might be capable of living a minimally good life despite a genetic disease. A policy of selective abortion threatens how we treat disabled persons in general. Ultimately, it threatens the principle of equality.

11. What’s Almost Certainly The Case Some genetic diseases are so awful, there is no justification for bringing the fetus to term. In other cases, it’s an open question whether the life that the child could lead would be minimally worth living or not. The biological parents should ultimately decide. It might be that we think some cases of selective abortion are morally bad, but that it would be worse to force parents to have a disabled child that they don’t want.

12. Gene Therapy: Treatment or Enhancement The thought is that gene therapy is a legitimate form of treatment, but morally problematic as a method of human enhancement. General agreement that gene therapy to correct for a disease or disorder is treatment. This includes things like returning a weak immune system, or heart, to “normal” functioning.

13. Gene Therapy: Treatment or Enhancement? Less agreement about whether things like correcting for shortness, or below-average intelligence, is treatment. Those who consider it treatment point to the ways in which these traits negatively impact the well-being of people who possess them. Those who consider it enhancement claim that traits of this kind fall outside the scope of medicine. A further worry is that genetic enhancement, if permitted, would eventually make social inequality even more pronounced.

14. Two Arguments for Enhancement as an Obligation If parents have a duty to give their children the best opportunities possible, as was claimed in the defense of genetic screening and selective abortion given by Purdy, genetic enhancement would seem to be not just permissible, but obligatory. Appeal to Consequences: to the extent that genetic enhancement leads to good consequences (happiness, achievement, greater empathy, etc.), it is not just permissible, but obligatory. Both these arguments must deal with legitimate social justice concerns that follow from even the permissibility of genetic enhancement.

15. The Bottom Line Genetic screening, counseling, and prenatal diagnosis are distinct forms of genetic selection, each of which have their own associated ethical issues. For those who oppose selective abortion, it might make sense to become serious advocates of genetic counseling Arguments against selective abortion focus on the effect it could have on how we view the disabled, as well as whether genetic disease necessarily entails a bad life. Arguments for allowing selective abortion focus on the obligations of the parent to the child, and the fact that for some genetic disease, even a minimally good life is impossible. Whether genetic enhancement is permissible turns less on the treatment/enhancement distinction, and more on whether the associated social justice issues can be effectively addressed.