The Genetic Revolution: Ethical Issues

Ernlé W.D. Young, Ph.D

Introduction

Good morning. Carolyn, thanks for that introduction and Marty and Pat, thanks for the invitation. Thank you for coming. What I'm going to do in this first introductory session is provide a quick overview of some of the important ethical issues that have been generated by the genetics revolution. Then, in our second session this morning, I want to talk a little bit about methodology, or at least how I begin to approach any ethical issue in medicine or the life sciences. And then the third thing that we're going to do this morning is divide you into groups and have you work at discussing and proposing solutions to some fairly typical but also fairly tough ethical issues. So that's the plan for the morning.

Let me circulate two books that have come out recently on the ethics of human gene therapy, which I'll touch on a little later. But I'll send them around because you might want to make a note of these two authors. I can commend both.

Topics

The four main topics that I will touch on in this introductory session have to do first with genetic testing; second with genetic therapies; third, with what is called eugenics, whether negative or positive; and fourthly I'll talk a little bit about cloning.

1. Genetic testing:

Testing

The Human Genome Project, which began in 1988, is proceeding rapidly. Recently, it was privatized and the project is now expected to be completed way ahead of schedule, possibly as early as the year 2003. One of the more dramatic spin-offs of the human gene project is the number of genetic tests that are rapidly becoming available. Some of these are for single gene disorders, those in which a particular gene mutation is causally necessary and sufficient for a disease to occur. Huntington Disease is a prime example of such a single gene mutation.

Other tests are for more common diseases in which genes are involved in a far more complex fashion--those diseases in which a genetic mutation may be neither causally necessary nor sufficient for the occurrence of the disease. And there are two types of these rather complicated connections. One is for heterogeneity, which has to do with multiple gene mutations being involved in a single disease. BRCA-1 and BRCA-2 are examples of this. The other form is what is called pleiotrophy, where a single gene mutation is involved in multiple, apparently unrelated diseases. For example, a test for the E-4 allele of the APOE gene is a case in point. A test for this allele can yield information both about coronary artery disease and about Alzheimer's disease. That's one of the little conundrums I'm going to have you work at a little later this morning.

Whether the tests are for single gene disorders or for so-called susceptibility genes, the point I want to make is we may have a lot of information coming our way fairly rapidly, long before we will be able to do anything effective about it in terms of intervention, in terms of therapies. So genetic information, genetic testing, is going to provide information about which we may not be able to do a great deal.

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