Privacy Rights in Genetics – Open Discussion – Bar-Ilan University

[Speaker A] My son.

[Speaker B] Who is now studying at Bar-Ilan—when he was three or four, it was on Tisha B’Av, and I read Lamentations in the synagogue, and people said, “Well done,” and so on. He was very quiet, and I asked him, “What did you think about the way I read Lamentations?” And he said, “You know, your voice is fine, but you really don’t know Hebrew.” Since no one corrected me, and I had simply read a chapter that someone else wrote, I assumed he meant my accent. I was a little troubled—my American accent was heavier then, in Hebrew. I was a little troubled, and I asked him, “Do you know what I do for a living?” At that time I was a prosecutor, and he thought and said, “Do you work in English?” So now he’ll see that I’m continuing to work here in English. As for what Abraham said, I’ll just say briefly that this is exactly the kind of approach I was talking about. I think it’s very, very important that Jewish law deal with this issue with the seriousness it deserves. Rabbi Soloveitchik said that there is a 614th commandment, namely that a person must believe that Jewish law has the tools to deal with every situation, at every time, and in every place. And that also relates to many of the things happening at Bar-Ilan, where there is a serious attempt—not superficial, a very serious attempt—to deal with issues, whether in law, psychology, technology, and so on. And that itself is something very important that needs to be done. It’s interesting because, as Rabbi Abraham pointed out, legal systems try to create new categories, and therefore the solution that most legal systems would give to this would not be “theft”; they would try to give this kind of act a new name.

[Speaker A] Jewish law, because it values precedent so highly, will try to expand the existing concept, which is exactly what happened here.

[Speaker B] And this is perhaps the most extreme example of deception. And even though this case is very theoretical, maybe one of the interesting things about thinking about it this way is that perhaps we ought to take the concept of deception much, much more seriously in our everyday lives and in our relationships with other people. Yes, I would like to respond and tell my fellow panelists how such a case, or a similar case, was handled by the ethics committee and see what your reaction is to that. We of course never had a case exactly like this, but on two occasions at Columbia the issue arose of post-mortem sperm retrieval, where in one case the patient had not yet died but was dying, and the wife wanted them to take sperm from him, and he could not give consent so that it could be frozen. And in that case she really wanted it because if one of their existing children were ever to have an illness for which she would need a bone marrow transplant, she could take it from the child, because one of their children, I think, had had cancer in the past. The second case was a man who had a severe stroke, a brainstem stroke, following heart bypass surgery, and the patient was alive. He and his wife were undergoing fertility treatments at the time because she was unable to conceive, but she had not conceived, and she felt that he was probably about to die, and she wanted his sperm for the purpose of having a child they had wanted to have before the surgery and the stroke. It was very dramatic. We actually went into his room and tried to communicate with him by having him blink his eyes. He had a brainstem stroke, locked-in syndrome, and we went in with two lawyers to see whether we could obtain his consent on this question, and the man actually died as we approached him. It was very—if this had been on television, you would have changed the channel and said it was too kitschy. In any event, in both cases we decided not to grant the wife’s request, plain and simple, because it was felt that we could not do this without the man’s consent. Because for a person to father a child—even in a case where the father was clearly interested in having a child when he was healthy—we could not assume that this would be his wish after his death, and therefore something of such significance as having a child, we could not carry out without his consent. And the only way in which our assisted reproductive technology people at Columbia would do it is if they actually had some written testimony beforehand that the patient would say, “In case of my death, I give permission for my sperm to be removed for the purposes of fertility.” I’d like to know the thoughts of my panelists on that. It’s an interesting question because the issue has come up in a different variant in Israeli law, where a soldier, after he died, you have a period of seventy-two hours where you can remove the sperm, and there his girlfriend wished to remove the sperm. There was a lot of talk about this actually, that the judge who handled the case said that we don’t have to assume that only a wife would request this; we should also ask the parents, and we can also assume that he would have wanted this. I think the result was very incorrect according to my way of thinking, for several reasons. First of all, I think if the issue of consent is important, you should receive consent.

[Speaker A] Sorry, what was the result in this case? The result was that they said that you could remove the sperm in that particular case. It didn’t go up to a higher court; it was a local family court, it didn’t go higher. And I think it’s unfortunate these questions are not— It’s interesting that sometimes we have an—

[Rabbi Michael Abraham] Ethics committee—they can be stricter than a court. I don’t know. This raises other questions. I don’t know whether consent is always the primary factor. I think we sometimes exaggerate the importance of consent. Just to take this example of becoming a father after death, Rabbi Aviner says that there are instances where someone is an orphan, and it’s very, very tragic, and we relate to an orphan—someone who doesn’t have both parents—as something very tragic. Why should we, to begin with, set up a situation like that? What I’m trying to suggest is that the questions are very, very profound regarding whether we want to do this to a child, that a child should be born in this way. Legally the arguments are very strong. Someone made the argument in that case that it’s even better this way, because now we know who the donor is, and the child can have grandparents and uncles and so forth. You see how clever lawyers can be—they turn what I think is a disadvantage into an advantage. I don’t know. Again, I think consent should be clear. I wonder whether it’s a similar—

[Speaker A] Question to the autopsy questions, whether consent is as critical as it seems.

[Rabbi Michael Abraham] It may be a condition; it may not be the only condition. Sometimes it matters, sometimes it doesn’t matter. Modern law takes the approach that we not only have to ask about the deceased, but also his wife, also his parents. These are good rules. I don’t know, because we’re at a point where the area of law is just developing, and we should be more careful. I don’t know whether inherently it’s relevant—I mean, if a person wants to do this, and it’s allowed, and it should be done, whether the fact that his parents don’t want to do it should be relevant at all. But they are very, very careful about that. But I see that as really a different kind of area, which really relates to the question of—in this case perhaps you could assume that he would want to help his child, if it’s limited to that kind of situation and you don’t have the autopsy problems. And it may be that for this kind of example, because you’re talking about something very specific, you’re not talking about creating a new life, but you’re talking about having a situation where you could help the child, the assumption might be—I might, if I heard a case like that, be interested in hearing evidence to somehow overcome the fact that he didn’t have—in the second story where it was very dramatic, where he couldn’t really blink his eyes in time to say it—I might want to perhaps derive the consent from the surrounding circumstances. Would you apply the issue of deception in general to a post-mortem sperm retrieval in a circumstance where you had no idea of the wishes of, say, the father, and the wife said, “I want my husband’s sperm to get pregnant with,” and we had no idea of the wishes of the father—would you use the principle of deception there and not take the sperm? No, that’s already a different question. As for the question, I’ll start with the first question. As for the first question, my feeling, actually, is that I don’t see why not do it. Of course, one has to distinguish here between several aspects. There is the aspect of harming the rights of the father who is about to leave the world. And there is the harm to the future child. In the pure legal sense, harm to a future child is not an issue, because he still isn’t here. It’s like what they call—I think at least—what lawyers call wrongful birth. Wrongful birth is a situation in which a child sues his parents, or whoever, the doctor who advised the parents, asking why they brought him into the world. He would have preferred not to be here: “It would have been better for a person not to have been created.” So therefore I don’t think he is here at all, at least on the formal plane, as someone who is a party to the matter. As for the father, if the father showed a clear desire to do it, because after all he made efforts together with his wife, then what’s the problem? So I don’t see why not assume that if he agrees, then it can be done. But he was alive, so we don’t know what he would have wanted if he died. He made those efforts before he knew he was in a terminal condition? Exactly, yes. So that’s perhaps—I thought he had already done it while knowing that, and that’s why. So that really is a harder question already, so that is indeed a harder question. Although still, still I don’t think that if we make a presumption in place of the father—after all, that’s all we can do—we can enter the father’s mind: what would a reasonable person in such a situation say? And I think a reasonable person in such a situation would indeed want to cooperate with his wife. But here it really is more a question of simply checking and seeing; I don’t think this is some sharp halakhic or legal category. We have to see whether the reasonable person would have been interested in such a thing. I see no impediment to doing it. As for the concept of deception, it is of course derivative of this issue. Once we reach the conclusion that it can’t be done, then it becomes deception, but it doesn’t start from deception. We begin with the question because we need to show that the person truly does not want to give over that intent, and then it is called that you stole it from him. Otherwise, if he is willing to give that intent, then you took the intent with permission. But wouldn’t you say that—

[Speaker E] The absence of an opinion by the father in all these cases is equivalent to a negative opinion? That’s also an assumption that we have no basis to make. Why should we assume negative, why should we assume positive? Assume there is no claim at all on the father; the only claim before us is the mother’s. Well, if I have to justify the ethics committee, I will say that the default position, before you do something invasive and proactive to somebody, the default position is not to do it.

[Speaker A] We need permission to do something; we don’t assume that the person will allow us to cut him and take the sperm, and so on. We need something positive in that respect. Rabbi. Two points. One point is: if we assume that it is deception, then—

[Speaker F] The default thing, the default point would be—even if it were not invasive, even if I already have tissue, some kind of tissue already, or sperm already in the sperm bank—if I say it’s deception, you have to prove that you have the right to take it; otherwise you have no right to take it. So “a reasonable person” is not enough proof to say that they agree to give it. That’s one point. Second point is about the whole issue of deception. What happens if I don’t want to have a child? I just want to scan the genetic material. I also retrieve the information hidden in the tissue. Now, we scatter our DNA all over, with hair; people sitting here on the panel left some DNA on the table, they leave it all over. I don’t think you can say that something left all over the world is in any way prohibited as deception to retrieve and scan and see what information it contains. The whole prohibition is to have a child—that’s the issue. Now, I don’t see that having a child has anything to do with theft, if you remove the tort element from that. Because theft means I obtained something, I obtained the information. Now what use I make of the information has nothing to do with theft. And if the information is readily available, then having the child is the problem because of the tort, because of the problems that it causes the father by burdening him with a child that is—

[Rabbi Michael Abraham] Not.

[Speaker A] Here.

[Rabbi Michael Abraham] I don’t agree. I think the claim that this information is accessible and exposed is, at most, not something that undermines the very claim of deception; rather, at most it can operate on the level of something like property washed away by the sea, or something already open to everyone, so in any case you no longer have rights over it, or you don’t care. None of that undermines the very concept of deception. You’re just saying there is no theft here, because the person takes it either because it was already taken from me, or because I consent. But that does not undermine the concept of deception. So here each case has to be discussed on its own merits. It may be true. Yes.

[Speaker A] I—

[Speaker G] Would like to raise one point that I thought about—the nature of evolution, animal behavior—that according to my intuition, it seems that unlike any other information, there is a very strong tendency of males to spread their genetic information. If you look in nature, males would fight and struggle and do anything to spread their genetic information. So I would say the basic tendency of a male is to spread his genetic information; you can see it from nature. That’s because they like how it’s done. That’s because they like how it’s done. One of the programs, one of the programs in nature to drive males to spread their—this is one of, of course, the motivations. But I think it is an inherent characteristic in nature for a male to spread his genetic information. Now, I think we as human beings are very much restrained because we have some other factors raising—

[Speaker A] The point of responsibility and the outcome of responsibility, things like that.

[Speaker G] It may be that the basic tendency—so if we remove the whole point of responsibility—is that the initial motivation is to spread this information, to give the sperm. So maybe unlike other kinds of information, in this case we have to prove that the owner would refuse to give away the information. The default situation is that the owner tends to spread the genetic material information. This is our basic evolutionary characteristic, and I think we are just held back, restrained, by fear of responsibility—what would, how should we take care of all the offspring. Animals that don’t have any fear of responsibility, they would fight and do anything to spread their genetic information.

[Speaker A] Professor Goldstein.

[Speaker H] I would like to take issue with what the rabbi said in terms of it not being deception just to take the information. There are—also under-mentioned, I think yesterday or today also in Israel—very strong laws preventing identifying people through their DNA. If you give tissue samples, pathological samples that are banked in a hospital, you are absolutely not allowed to know about the genetic identity of the person. If someone were to take the glasses here from the dais and take DNA from those glasses, and then do DNA sequencing, and then sell it to a biotechnological company, or to your insurance company, this would definitely be deception, and the information itself is something that you would certainly—even though you haven’t lost anything, you have saliva that you left in the glass—it’s most certainly something wrong there. I mean, not even despair of recovery; I think it’s deception in the way Rabbi Abraham defined it. And I think that’s—it’s very clear that genetic information is something private, it has value, I don’t know what you want to say.

[Speaker B] Just to elaborate on that point—and it connects with Rabbi Shabtai’s point—the question that you asked me while I was speaking, whether you look at it from the beginning or from the result: in tractate Bava Batra, the Meiri talks about the fact that—he talks about visual damage, and he gives an example of damage caused by seeing something. So he talks about the fact that if the walls are not very strong and you can hear things, he calls it auditory damage, that there’s damage because you’re hearing something. I actually brought this in a wiretapping case. And it seems to me that if we talk about a situation where some information is very easy to obtain—assuming an example that I have super-hearing and I can hear everything that everyone says, or I can see into a building, or you know, think recently about “How goodly are your tents, O Jacob,” that the openings of the tents did not face one another—it would seem that there is ample support in Judaism that just because something is very accessible and very easy to get to, that does not in itself make it an action that should be approved of. So again, if we take an even simpler example than what was raised: I touched this cup, I’m leaving the cup here, so in some sense everybody can take it, and someone takes it for his own interest—he wants to know how healthy I am, and he wants to know more about my health, let’s say he could. So it would seem that that should not be allowed, on the assumption that it’s clear that he is invading my privacy in a similar sense of visual damage and auditory damage. It could be because it’s so accessible that the reason for the prohibition should be changed. I’m willing to accept the point that Rabbi Shabtai made. But to say that there is nothing wrong with that since I left the cup, and I plan to leave the cup, even though I know that someone could do this—I don’t plan to walk around all the time collecting the garbage everywhere—should be something that should be taken into account. There actually was an American Supreme Court case that talked about the fact that people can’t go through your garbage, even though that’s where you’ll find more about a person than anywhere else. If you want to know the most about a person, go through his garbage. All the garbage I throw out, it’s accessible; I’m not keeping my garbage. So again, I would think it’s important in this category to develop this sense of Jewish privacy, and I think the sources are all there. It could be, as I say, the basis for the prohibition is different, but I think we should be clear that it shouldn’t be done. Yes, sir. Speak up please. Would it make any difference if the grandfather in this case, instead of being a charismatic Hasidic rebbe, was a mass murderer? You know that story of the boys from—

[Speaker A] Brazil who—

[Speaker D] They took Hitler’s blood—

[Speaker A] Or whatever, and—

[Speaker D] They made clones from him? Would the decision go differently if there were negative long-term evolutionary implications rather than positive? Well, which decision are you referring to? You said, “Would the decision go differently?” Would it be allowed for this mohel to take the foreskin for this purpose? Oh, I think what you heard was that if the woman wanted to carry—

[Speaker A] The pregnancy to term, she has a right to do so.

[Speaker D] I think that’s my understanding. We would not force her.

[Speaker A] And if he were a mass murderer and she wanted to have the child, I’m not sure that that would change, although let the panelists discuss that. And on the issue of the stealing, it still becomes—I don’t see that the illegality of the act changes because of the nature of who the person was. But I invite the panelists to comment on that. Would that make any difference? There is an example in the Talmud, I—

[Speaker B] Forget who it says this about—is it about Hezekiah? I don’t recall—where they said that he did not have children precisely because he knew— I’m sorry, I have to talk into the mic—where somebody did not have children—

[Speaker A] Because he knew through—

[Speaker B] Divine awareness that the children would be evil, and that was not a consideration he was entitled to take. It’s a broader question whether—Hezekiah, yes, as I said, Hezekiah. That was not recognized. So I don’t know whether it would really change the question. We believe in free will, and that the wicked person can give birth to a righteous one, and a righteous person can give birth to a wicked one, and unfortunately there are enough examples of both. So I don’t think that itself would change the question when people want to have children, not necessarily looking at it in terms of a long-term effect on the evolutionary development of humankind. Professor Sperber?

[Speaker A] I just wanted to say—

[Speaker E] That if I had appendicitis and they operated on me, and then the doctor took away the bits that they took out of me and gave it to his daughter, and then a few years later I was told—

[Speaker A] I’m responsible for such a child, I would be absolutely shocked. Would you be angry or just shocked? Furious. You would be furious. I would wish you success.

[Speaker B] Okay, just, I wanted—

[Speaker I] To set the record straight. Okay, clarify the emotional state—not just shocked, but furious. Yes, Jonathan. One more information please. In Jewish law is there any consideration of the responsibility of a father, whether it’s donating sperm or inappropriately giving—

[Rabbi Michael Abraham] Cells—the responsibility to be a father? Is it willy-nilly, that you can just say, “Okay, I’m just going to donate sperm and not care about the responsibilities of raising this child”? That’s what I said earlier: if we really recognize the son as my son, meaning the son of the donor, of the one who donates the sperm, then apparently I should also have obligations toward him. That is exactly the question. Or not—perhaps he is not my son; that is, I think, a minority opinion among halakhic decisors—and then there are no obligations. But it begins with the question whether he is my son. You can’t separate these questions.

[Speaker B] What is your conclusion?

[Rabbi Michael Abraham] What is your conclusion? I don’t have a conclusion, at least not me. In most of the—

[Speaker B] Secular cases the conclusion is that it is the father, and if we assume he’s the father, then the son would have to respect the father and the father would have to fulfill his obligations. It also would seem to me that we would prefer a situation where a child is not fatherless, and so if he’s not the father, it means he’s—

[Speaker I] Born of a mother but not a father. Practically it’s not going to—

[Speaker B] Happen. They both are going to be of age, with no responsibility. Yes, but assuming he is the father, would he have to honor him? I don’t want to take this too far—would the son have to honor him? It seems to me he would honor him. If we reverse your question and say: does he have the obligation of the Fifth Commandment to respect his father? He would have to respect his father.

[Speaker E] Practically, standing up—

[Speaker B] In the room for someone who is the same age—it’s a different, it’s a different problem. You know, you might have those problems in the days of the resurrection of the dead, I don’t know, I don’t want to quite get there. It could actually be actual, could occur. But how would that work in the kindergarten? Go ahead. How would it work in the kindergarten, yes. Well, he would have to let him sit first, I guess. Yes, sir. First of all, I’d like to preface my remarks to say I don’t know if I’m the only one who has such tremendous pleasure hearing a justice of the Supreme Court of Israel quote the Maharal quite frequently, and I suspect that that’s a rather unusual skill in that institution. Now therefore, let me somehow—although they are good judges—

[Speaker E] I am a student among my rabbis. In any case, I have one item in the Torah that wasn’t cited that may be quite relevant to clarify the issue. There is a positive commandment of returning lost property—I was thinking of returning stolen property. We learn a lot from that. The sages tell us that the robber or the thief does not receive lashes, he would not be sentenced to a long prison term in modern terms, because it is a prohibition repaired by a positive commandment—a positive commandment to return the stolen property. On the other hand, even if the stolen item is no longer in existence, if he consumed it, he is obligated to compensate the person from whom he stole. Now perhaps we have a completely separate issue if we are talking about the case at hand—deception, identity theft. How can you—where is returning the stolen property? How can you return that? The DNA that was taken from the foreskin—how can you return it? It doesn’t have a financial value that you can give to somebody. Who was injured by that? So therefore, if we call this a different issue, X, first of all, is it a prohibition like deception? Well here, if you say there is no returning of the stolen property, then he would be subject to lashes, only because we say it’s theft he is not—

[Speaker A] I must interrupt in the interest of time because you have a long question, but let us, let us have just an answer to the beginning of your question. Would you like to— Also with theft, the basic obligation is to return the item that was stolen.

[Rabbi Michael Abraham] And if I don’t have it, then I need to return money in its place, right? Now here too, it’s the same question, and the halakhic decisors discussed this question a lot. Here you don’t even need to get to constructions of deception. The question is: what is the basis of the obligation to compensate in a case where you harm intellectual property? So if you adopt one of the mechanisms of the halakhic decisors who say that you owe payment for benefit, or because this is a loss, or because I benefited—it depends how you look at it—then here too there would be an obligation of compensation in the same way. That doesn’t necessarily relate to the question of the prohibition. The question whether this theft itself requires restitution—that relates somewhat to the Kehillot Yaakov that I mentioned at the end, but this— Punishment?

[Speaker G] That is—