“How long will you need to find your truest, most productive niche? This I cannot predict, for, sadly, access to a podium confers no gift of prophecy. But I can say that however long it takes, it will be time well spent. I am reminded of a friend from the early 1970s, Edward Witten. I liked Ed, but felt sorry for him, too, because, for all his potential, he lacked focus. He had been a history major in college, and a linguistics minor. On graduating, though, he concluded that, as rewarding as these fields had been, he was not really cut out to make a living at them. He decided that what he was really meant to do was study economics. And so, he applied to graduate school, and was accepted at the University of Wisconsin. And, after only a semester, he dropped out of the program. Not for him. So, history was out; linguistics, out; economics, out. What to do? This was a time of widespread political activism, and Ed became an aide to Senator George McGovern, then running for the presidency on an anti-war platform. He also wrote articles for political journals like the Nation and the New Republic. After some months, Ed realized that politics was not for him, because, in his words, it demanded qualities he did not have, foremost among them common sense. All right, then: history, linguistics, economics, politics, were all out as career choices. What to do? Ed suddenly realized that he was really suited to study mathematics. So he applied to graduate school, and was accepted at Princeton. I met him midway through his first year there–just after he had dropped out of the mathematics department. He realized, he said, that what he was really meant to do was study physics; he applied to the physics department, and was accepted.
“I was happy for him. But I lamented all the false starts he had made, and how his career opportunities appeared to be passing him by. Many years later, in 1987, I was reading the New York Times magazine and saw a full-page picture akin to a mug shot, of a thin man with a large head staring out of thick glasses. It was Ed Witten! I was stunned. What was he doing in the Times magazine? Well, he was being profiled as the Einstein of his age, a pioneer of a revolution in physics called “String Theory.” Colleagues at Harvard and Princeton, who marvelled at his use of bizarre mathematics to solve physics problems, claimed that his ideas, popularly called a “theory of everything,” might at last explain the origins and nature of the cosmos. Ed said modestly of his theories that it was really much easier to solve problems when you analyzed them in at least ten dimensions. Perhaps. Much clearer to me was an observation Ed made that appeared near the end of this article: every one of us has talent; the great challenge in life is finding an outlet to express it. I thought, he has truly earned the right to say that. And I realized that, for all my earlier concerns that he had squandered his time, in fact his entire career path–the ventures in history, linguistics, economics, politics, math, as well as physics–had been rewarding: a time of hard work, self-discovery, and new insight into his potential based on growing experience.”
is that I cannot multi-thread, and this is terrible for schooling. What if there is a school system which only teaches one thing for a week to reduce context-switch cost, and that is it. For sure, this is somewhat related to my poor time management skill. I really want to only think about one thing everyday, and make that awesome.
The ownership of human biological material never received so many debates in old days. But thanks to the advances in biomedical research, nowadays, most of human biological materials have their practical meanings. The new question is, should we recognize the property right one has to his/her own body and body parts? From the surface, if we recognize the property right of one’s body, one can protect and profit if necessary from his/her own body. On the other hand, it also would open the door for potential exploitation and abuse.
It appears that the full property right to one’s body is way too powerful. Effectively, it creates a free market for human biological materials. If one can sell part of his body for money, people will do it. One can argue that if someone want to sell his body part for the money he/she need, it will be not ethical to not letting he/she do it. However the potential exploitation, e.g., someone can buy your organism and hold you hostage would appear to violate every humanity principle.
Privacy is the right that concerns how the information relates to oneself is selectively revealed. The primary concern of privacy is the information, and one interesting fact about information is its non-exclusivity. It is a derived right from property right but it is one of the key elements in many human biological material disputes.
One of common argument on human biological material is about consent. In John Moore case, one of his arguments is that the doctors never performed their duty to inform him the potential usage of his body material. Assuming that John Moore did have property right over his detached body part, the consents that the doctors need from John Moore comes two parts: first, they need to get the consent to examining the body tissue; second, they need the consent to commercialize the product that comes from his body tissue. For the first consent, the privacy is a key issue because by examining his body part, the doctors can potentially obtain private information of John Moore himself. Though what is considered private is debatable in many privacy related issues, but in this biological case, it would be clear that anything made the body part unique therefore having biomedical interests can be regard as private to John Moore. For the second consent, by commercializing his body tissue, his private information will be made available to more people. Therefore, his consent is necessary.
If the privacy of one’s own body information is widely recognized, John Moore’s case is clearer from privacy point of view. First, the ownership of his disposed body part is irrelevant. If his body part is disposed and never examined, much like our disposed fingernail or hair, this is non-issue. However, that the doctors examined his disposed tumor and never got his consent is what made this a court case. Thus, John Moore’s case, in fact, was a simple privacy invasion.
From John Moore’s case [George Annas, Outrageous Fortune: Selling Other People’s Cells, The Hasting Center Report, Nov. 1990], I would say that privacy is often a strong argument for human biological material dispute. But would it be too powerful as property right over body part, thus, leads to all sort of unintended consequences? To answer this question, let’s start with basic properties of privacy. First, privacy is non-transferable. If one gets the access to some private information from its owner with proper consent, it doesn’t nullify the owner’s access to that private information. The very fact that privacy is dealing with information, which in nature, made it non-transferable. If the ownership of privacy cannot be transferred, the exploitation from body ownership (e.g. hold a person hostage by gaining ownership of his vital body part) is a non-starter.
Another debatable fact about self-ownership over body part is that, if a person still owns his/her body part even if that part is detached from him/her. Lori Andrews [My Body, My Property, The Hasting Center Report, Oct. 1986] made the case that if the body part is detached it is no longer the interest of that person. Therefore, one shouldn’t have property right over his/her detached body part. However, this statement gets a lot challenges, one can argue that even if the body part is detached, for example, one’s corpse, that very person still has much interests in deciding what should/shouldn’t be done over his corpse. On the other hand, recognizing the property right over detached body part will also likely raise severe issues. For example, if we owns every dead cell of our body, even as simple as public cleaning is impossible because we need to get explicit consent to give up rights in one’s dead cell (hair, finger nail, or just scratched skin cells) from everyone that walked over the street. With the privacy concern, we tackled the problem by claiming that one has the right over the private information that contained in his/her detached body part. Thus, any actions, such as sweeping, collecting or disposing, that won’t reveal or potentially reveal this private information don’t need the consent from the owners. Any other actions, specifically these actions that reveal certain interesting or unique properties in that body part, should subject to the privacy measure.
The full self-ownership over one’s body is often criticized being deferring force on the pace of scientific research because properly obtain consents from anonymously collected samples is infeasible or feasible but time-consuming. Since privacy dealt with information, if we cannot establish the relationship between a particular piece of information with a person or a group, the privacy is preserved. Thus, in the case of genuine scientific research, if the proper anonymizing technique is deployed, such research doesn’t need privacy consent from the rightful owners. The logic can be extended to its extreme. Let’s revisit John Moore’s case and imagine that if a doctor that walked over the disposing site and picked up John’s disposed tumor, and made the discovery. Should he attain the consent forehead? From the privacy over anonymizing argument, the doctor doesn’t need such consent because the information he obtained from the tissue doesn’t correlate to the particular person, thus, the privacy of that person is not a concern. It is the same analogy that if one accidentally picked up an artifact in wild, he is not guilty until he was notified about the proper ownership of that artifact and declined to return. Thus, as long as John cannot establish the relationship between himself and the found body part, the doctor has no blame on.
On the surface, it appears that the privacy over anonymizing argument would receive a lot abusive interpretations. One would immediately point to the Havasupai Indian tribe case [Amy Harmon, Indian Tribe Wins Fight to Limit Research of Its DNA, The New York Times, Apr. 21, 2010], and argue that the research group has already properly anonymized data, thus, no privacy invasion in place. However, a closer examination in the Indian tribe case would reveal that the privacy over anonymizing argument doesn’t hold in this particular one. Their examination on blood sample reveals a unique trait on this Indiana tribe, a correlation between the private information they obtained and the ethical group can be established. From this point of view, they weren’t exempted from the obligation to obtain consent from the particular ethical group. In general, to exempt from privacy invasion by anonymizing data, the unbiased criteria for data sampling is crucial. Otherwise, a collective consent from the biased group should be obtained to avoid privacy invasion later.
I’ve argued in favor of privacy as the underlying right to settle human biological material dispute in case by case basis and try to exhibit from these cases that when using privacy as the main measurement on these cases, certain exploitation that caused by self-ownership can be avoid; difficulties over recognizing ownership over detached body parts can be tackled; scientific researches over human biological materials won’t be halt because certain unfeasible aspects in favor of self-ownership. These case-by-case examples help to visualize the impact of the argument, however, it will still leave some doubts about how practical such argument is. Especially, privacy is a broad word that umbrellas many concepts. For case-by-case examples, one can handpick a particular privacy measure to suit a particular purpose. In the following paragraphs, I will try to establish theoretical background for the privacy measure in human biological material dispute.
First, a narrowed view of privacy is necessary for later argument. Specifically, in our case, clear definitions of privacy and the rightful owner of such privacy are crucial to determine the potential privacy invasion. Under human biological material scope, privacy can be defined as the private information about one’s biological trait that otherwise cannot be precisely obtained other than examining his biological component. As far as the definition concerns, the invasion of privacy can only be material based. Thus, such invasion is measurable. The definition of the rightful owner of such privacy is also troublesome because the ownership cannot be transferred as I discussed in the first few paragraphs. We also want to avoid the property right over body parts in this definition. It seems that a damage-based definition is appropriate here. Thus, the rightful owner of such privacy would be the one that will receive potential damage by the leak of such private information. The simple definition would be helpful when I try to establish the right for compensation.
Traditionally, privacy right is a derived right from property right. Therefore, the claim over property right is the basis to ask compensation. However, the above definition claims that, the property right is not necessary for asking compensation. The consent required for privacy invasion under human biological material scope, is not based on the property right one has over the involved body parts. Rather, the consent is a mean to protect the rightful owner from the potential damage caused by revealing the private information to a relevant party. The rule is that since the rightful owner would potentially be damaged from that private information, it is within his right to ask for compensation and have full understanding about the consequence of the usage. The argument doesn’t require that the damage should have been done before the consent or compensation. It is a precaution measurement. Often times, a precaution protection suffers from the problem that it is hard to assess forehead because the potential damage can vary for a great degree. In that case, the potential damage is used to establish the right for compensation, how much, or in what form the compensation should be, is not directly related to the severity of the damage. If agreed by the both sides, it should be sufficient to assess such potential damage.
The privacy-based method seems like a capable method to specifically deal with human biological material dispute. However, in broader sense, it may not be sufficient to settle biological material dispute in general. The privacy method specifically concerns the natural-grown human body part, which contains unique information about this person. As the genetic therapy becomes reality, it may have some serious issues to deal with that. For example, considering the situation where one patient received genetic therapy to add a new gene that may prevent breast cancer. Since the particular gene is synthesize and has indisputable owner, she may have a hard time to claim that her new gene would under the protection of the same privacy principle as her natural genes. It is a problem because in order to dodge the property right argument, the alternative definition is not compatible with property right definition under this circumstance.
In this paper, I explored the alternative method to deal with human biological material dispute, and proposed that, privacy, as the underlying right is sufficient and clear enough to settle many existing human biological material disputes without negatively impacting genuine scientific research. Furthermore, a narrow definition of privacy is given under the human biological material scope. I proposed a damage-based method to determine the relevant parties in such privacy invasion. In the end of the paper, case that may not be feasible for the privacy-based method is also discussed, and the reason is explained.