the proceeds. They will, of course, generally find themselves in a weak

bargaining position. People having the biological attributes necessary

for this type of research are, in general, not unusual.


for example, many women have cancer of the cervix.

If Mrs. Hagiwara, for

example, had attempted to negotiate for a share of the proceeds in advance

of "contributing" her cells, Dr. Royston probably would have rejected her

as a subject and invited one of the many other women with the same disease

to enroll in his project.

Of course, there are some individuals who have very rare attributes

who might, at first glance, seem to be in a relatively strong bargaining


For example, there are some individuals who have rare diseases.

In general, products that are developed as a result of research involving

such individuals do not have major commercial implications.

This is among

the reasons that Congress passed its act facilitating the development of

"orphan drugs."

Finally, let us consider the possibility that some individual might

have some truly unique attribute which could be exploited by researchers

to create some thing having great market value.

Since I cannot think of

an example in the realm of research, let me suggest an analogy. Suppose

we had somebody like Patrick Ewing.

In the "natural lottery" a few people

draw extraordinary "numbers."

Some have very rare lethal diseases and

some grow to be over 7 feet tall and have exceptional athletic skills.

As we have noted with Patrick Ewing, they are truly in a most powerful

bargaining position.

Should Congress act to limit their bargaining power?

Given the prevailing social, political, and economic views held in the

United States the answer in the case of basketball is clearly "no." In

the case of research, statutory constraints on such "power" might create

problematic conflicts.

If our "Patrick Ewing" refused to give a pint of

blood for less than a million dollars, and the research leading to a cure

for AIDS was at the stage of inevitability, needing only that pint of

blood for its completion, what would we do? Admittedly, the problem is

very unlikely to come up.

In my judgment it is equally unlikely that research designed to

develop marketable products from human materials will present any problems

to the researcher-subject relationship that cannot be resolved within the

framework of existing informed consent regulations, if they are interpreted

Intelligently to meet the contingencies of specific programs in this field.

I believe that this task can be accomplished by Institutional Review Boards.

Thank you for giving me this opportunity to present my views.

Mr. VOLKMER. Thank you very much, Dr. Levine.

Dr. Murray.

Dr. MURRAY. Thank you, Mr. Chairman.

If there is any contribution I can make to the deliberations of this committee, it will be to dig into our moral traditions and to look at our current practices for what they can tell us about the moral content of our relationship with our physical bodies.

I apologize in advance if this seems overly abstract, but as the French philosopher Paul Valerie once wrote, “I introduce here a slight observation which I shall call philosophical, meaning simply that we can do without it.” But I am convinced in this case that a little philosophy, at least, is just what we need if we're to understand what's at stake here.

I can find three general models of our relationship with parts of our body that become separated from it—as commercial property, as surplus, or as gifts. The first model of the body is property, fair game for sale or purchase in the marketplace. In favor of this idea we can point to the fact that people may legally sell their blood or their semen in this country; yet, there are many things in our society that are not for sale. Laws forbid the sale of our freedom, our children, and most recently and most relevantly-our bodily organs. The enormous furor and rapid congressional action against a Virginia entrepreneur who proposed to buy and sell human organs for transplant testified to the deep moral repugnance many people feel to the notion of a market for transplantable organs.

Now, there are probably two sources of this repugnance. One is the worry that permitting organs to be bought and sold will result in the poor selling and the wealthy buying. This is what has happened in Brazil. The second source is the deep conviction that the body and its parts are somehow different from other things, central to our dignity as human beings; that is, they are not commodities. Even though we may sell our labor or our ideas, even though we may place our health at risk in our work or leisure, the conviction that the physical body and its parts should not be for sale is, I think, widely held.

Some things, then, are not for sale. The model of the body as commercial property, something to be bought and sold at will, does not comport well, I think, with our moral or legal traditions. Yet, that doesn't mean that no use can be made by others of body parts when we no longer need them when they are superfluous to us; when, for example, a diseased organ is removed; or when, upon our death, a still-healthy organ can be transplanted into some other living body. Most of us do not object to that part being put to such good use. Should we think about body parts that are no longer useful to us, then, as surplus?

Well, typically, after a diseased organ is removed from the body of a living person it is sent to the pathologist, who examines it to confirm that it was, indeed, diseased; that's a form of quality control on surgery. But once the pathologist is finished with it, there are only a few things that will happen to it. It may be used in research; it may be used for teaching, or it may be disposed of.

Most people seem content with this arrangement. We don't seem to have any particular desire to be reunited with a diseased organ. Once it's no longer a part of the whole, we're happy not to see it again; if anything, we might be repulsed by it. But does this mean that we think of it as surplus, as something that we have abandoned, something that we have no moral interest in?

I think the answer is "no." We have not abandoned all interest in what was formerly a part of us. Imagine for a moment that instead of using removed organs for research and teaching and then disposing of them discreetly, something awful were done with them. Suppose they were displayed at a party. I think most of us 'would find that objectionable, especially if no one had asked our permission to do it.

So removed organs or tissues may be surplus in the sense that they are no longer useful to the person from whom they were taken, but that does not mean that the individual or the community loses all interest in what happens to them or that they may be appropriated by others for profit. The community has an interest; the individual has an interest in having his body being treated respectfully, and the community has an interest in seeing that human bodies and their parts are treated with dignity.

I think the closest we can come to a way of thinking about body parts and our moral relation to them that captures how we actually act and feel is to regard them as a very special sort of gift. Let me tell you a story I learned from a physician friend. There was a young boy with a very rare and valuable blood type having to do with one of the clotting factors. For quite a while, he regularly donated blood to be used in research at the medical center, where he was also receiving treatment; he always gave the blood without remuneration. A pharmaceutical company found that they could make use of the same blood in one of its manufacturing processes. The boy was told about this, and he agreed to give it to the pharmaceutical company at a stiff price.

Now, the boy and his family probably felt that while it was fine to give without remuneration to a noncommercial enterprise, that they were giving the blood for science in the hope that some human good might come out of the research, you would be a sucker to give it to a company who would make plenty of money from it.

I think this story says something about our willingness to give gifts of ourselves, even ones that pain us under the right circumstances. At the same time, it tells us that arrangements that smack of commercialism change the nature of the transaction to something quite different from a gift.

In the interests of time I'm going to skip over large portions of testimony and argument that are there in the record.

In our laws and practices we seem to have generally rejected the notion that the body or its parts are commodities. We forbid commercial trade in body parts. We organize the extraction of pituitary hormones in a nonprofit manner, and we take pains to assure that the organ donation system-and I spent a lot of time looking into the details of how we procure organs and who gets what—that they are just that, donations. The people who donate them, the families, their estates, don't get wealthy from this; and with only one exception of which I'm aware and which I don't know much about-it's a company in Denver-all organ procurement organizations are nonprofit enterprises. People earn a salary from them, but nobody grows wealthy. People just don't take well to the idea of an organ mogul sipping wine next to his kidney- or heart- or liver-shaped swimming pool. We permit modest payment for services rendered in the course of obtaining, shipping, and implanting organs, but we insist that the donor's motive not be financial.

So, I think, we need to think about the body parts that we might give to science as a gift. We're content with the system of organ procurement that steers clear of profit; we're comfortable with a system that uses removed organs for research and teaching. The problem arises when the conditions under which we thought we were making a gift suddenly and dramatically change. The thought of some scientist laboring over our now-separated appendix, trying to uncover nature's secrets-or teaching a new generation of physicians or researchers—doesn't bother us. It may even give us a little satisfaction, knowing that some good has come out of our misfortune. But now that the possibility has arisen that someone may become wealthy as a result of our gift, may win in the biotechnology lottery, many people may be disgruntled.

Suppose that—here we need an analogy. I've struggled hard to think about-how to think about-the body parts, so forgive me if this seems a little frivolous; I hope it isn't.

Suppose that we give somebody a gift which that person accepts, and in short order asserts that it is their property and proceeds to make lots of money from it. Assume that we've given a set of family recipes to a friend, only to discover a couple of years later that the person has made a cookbook out of it and is making a lot of money off of this cookbook. I can't say anything about the legal question of who owns what; I don't know anything about that. But I can say something about the moral point of view, that many people would probably feel that they had been taken advantage of.

Our sense of justice would be outraged; first of all, because a personal gift has been made public, and second, because the friend-or at this point, ex-friend-will not even share in the bounty that our gift made possible.

In any particular instance of gift-giving leading to profit for the recipient, the judgment of whether or not an injustice has been done will turn on several circumstances, and I'll mention just three.

What were the terms, implicit or explicit, in the gift? In our recipes example, we never explicitly said that you should not publish them for profit; but, then again, we never even contemplated that possibility. We could justly feel that the recipient ignored a mutual though implicit understanding that you don't do that sort of thing.

How close in substance is the profitable item to the original gift? If the recipes in the cookbook are significantly modified as a result of a lot of experimentation in the kitchen, we'd feel less outraged than if they were straight-forward copies, word-for-word with the originals.

Third, was the contribution unique? If our family recipes were only minor variations of ones that are widely available, we have less grounds for feeling indignant than if they were genuinely original and uncommon.

This will probably come to be known to biotechnology as the "tuna hot dish" or "lasagna" analogy, and that would be OK, but I do think that asking these three questions of human biologicals helps answer whether or not our sense of justice would be offended in a particular case. What was the mutual understanding at the time the gift was made and accepted? The fact that we did not contemplate a particular use does not mean we've consented to it. Has the gift been significantly modified? Well, the closer the item is to our original gift, the more we feel unjustly treated when it is appropriated and commercialized. Was our contribution singular or common? Take the case of the human gene that produces human growth hormone. Several companies are now producing HGH from cloned genes that at some point came from an individual human being; yet, the gene for normal HGH is in every healthy body and, in principle, could have been cloned from anyone's genetic material. In that instance, the contribution was from something held in common rather than something unique to a particular individual.

So our sense of whether or not an injustice has been done is going to depend on several factors, and I've just mentioned three; there are probably more.

On the whole, the system that we've been using for disposing of body parts seems to have served society well. Researchers and educators get the materials they need to do their work; people whose tissues have been removed are confident that their parts are being treated respectfully, and possibly, even being put to socially valuable use. The public has the twin satisfactions of knowing that medical research and education is proceeding with the benefits that both bring to all of us, and that the human body is being given due respect. These are all elements of the common good that we have, I think, a strong interest in protecting, and they're now being threat

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