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Friday, December 13, 2002

Public Comments

CHAIRMAN KASS: Look. There's been a request for one public comment. Ms. Susan Poland would like to make a comment, please.

Welcome back.

MS. POLAND: Thank you.

Dr. Kass, members of the Council, this will be brief, and my comments are my own only.

Today, this is a comment actually about, quote, the safety of the technique, unquote. Today Dr. Collins talked about pre-implantation genetic diagnosis, which is biopsy of a blastomere cell taken from an embryo prior to implantation in the uterus. And that particular technique is based on in vitro fertilization, not in vivo fertilization, which it's using ICSI, which is an active fertilization method, to borrow terms from euthanasia and the bioethics literature there, or passive in vitro fertilization, which is what we think of in the traditional method, where you mix sperm in a Petri dish and hope fertilization occurs.

As a lawyer, I have been trained to look not at safety, but at harm, and particularly at causation of harm, and when you look at causation of harm, if I were to have a couple that came to me, say, that was unhappy with the genetic results or a pre-implantation diagnosis of an embryo that is then born, and let's say their fetus and their child didn't test for the disease that they sought to not have, but had some other disease that by altering the chromosome then came out.

I would have to then go to a state court, because that's where medical malpractice occurs, and say to this judge, "Well, this is the result. They weren't given informed consent about the safety of IVF. They weren't told that they could have prenatal diagnosis because they weren't infertile and they could have had an abortion. But this is the result. They're unhappy. We seek these damages, Your Honor, for the emotional grief these people had to suffer twice because not only did they have a child, but they had a child with a disease that they were not told about could happen, but then the child also wants this lifetime care."

So the judge, who is a state judge, who does not have the tools with the follow the Frye rule and the rise of Daubert, would then be in the position, particularly on a comparative negligence state, to say, "Well, what part of this damage comes from IVF and what part of it comes from the pre-implantation diagnosis?"

Because Dr. Collins' work today was built on a secondary technology, pre-implantation diagnosis built on another technology, which is in vitro fertilization.

And so my basic statement is that I think it is highly unethical, illogical, and if the federal government were a private party negligent for anyone to practice pre-implementation diagnosis without funding safety on just basic IVF.

The Genomics Institute, with the social, legal, ethical — I know I got the acronym wrong — implications, covers genomic research, and I know your charge does deal with genetics, but I feel it's broader if it deals with bioethics. So I think you need to have a base of what the safety is for IVF that we consider traditional IVF, any variations that my friends down in Norfolk do with ICSI, and then anything else that we're going to do that's genetic enhancement.

For the government to fund the secondary technology and look at the safety doesn't make sense when the base technology hasn't even been looked at.

Thank you.

CHAIRMAN KASS: Thank you very much.

Is there anyone else who would like to make a public comment?

Understanding, by the way, the house rules are comments are to be limited to five minutes or less. Please announce your name.

MR. SULLIVAN: Neal Sullivan, GlenRock, New Jersey. I'm here visiting with my son. I'm not a bioethicist of any sort. I guess I'd be classified as a general taxpaying public.

Sitting here this morning, it's frightening. It's the mission of this procedure of happiness to the parent and disease free child. It's worrisome.

As a parent, I know people — fortunately I'm not in that case — but I know people who have diseases. I've had a disease. I know people whose children had a disease. I don't know what we're to make of them if that's the goal of this purpose.

I don't know about happiness. It's a very iffy type of thing. It seems to me the 800 pound gorilla in this room is the issue of abortion, and I find it ironic that if the goal is the children or the parents, which I think is a noble goal, there are various means of arriving at that goal.

One is this type of method. Another one is adoption. So I find it sort of ironic that as the doctor mentioned, he would mention a miscarriage as a spontaneous abortion, but everything else was termination. And he also at the end said something to the effect that if God forbid, or I forget the exact terminology, but having an abortion would be something bad. I can't think of the exact terminology, but it would seem to me that this process in its nature supports abortion. Abortion is a termination, using the doctor's language, but continuing that language, termination of a child.

If the end result is children, this is a contradiction in the purpose of doing that. Children make parents happy. Now, we can't be sure they'll be disease free, but we know they will be born.

Now, with the amount of abortions in this country I would presume that that would be another option to this procedure. So I find a contradiction and maybe a hypocrisy in the very nature of the discussion.

Thank you.

CHAIRMAN KASS: Thank you very much.

Let me wish members of the — let me first thank Dr. Schatten for his presentation and generosity and forthcomingness in the exchange.

Let me thank members of the Council for their attention, durability, and wish everybody a very Merry Christmas, a happy New Year.

We will see you January, and the best wishes go also to the members of the public. Thank you for joining us.

The meeting is adjourned.

(Whereupon, at 12:47 p.m., the meeting was concluded.)

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