Bioethics

Bioethics: Standing Athwart Science, Yelling 'Whoa'*

I'm a bioethicist, and I am here to help slow down scientific and medical progress

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Standing athwart science, yelling "whoa,"* often appears to be the favorite default activity of many folks who get involved with bioethics. Today the New York Times has published an op-ed in this genre of bioethical handwringing. It's by Rebecca Skloot, author of the best-selling The Immortal Life of Henrietta Lacks. In her book, Skloot details the how cells taken in 1951 from a tumor that eventually killed Baltimore resident Henrietta Lacks became the first immortal human cell line and one of the most widely used in biomedical research. Lacks nor any of her relatives were asked for permission to use the HeLa cells derived from her cervical cancer for research.

The Lacks family first learned a bit about the HeLa cells when some were contacted in the 1970s by researchers for blood samples in an effort to figure out how to combat contamination of other cell cultures by the vigorously growing HeLa cells. After Skloot's book was published, the family sought more information and eventually negotiated an agreement in 2013 with the National Institutes of Health that essentially granted consent to continue to use the cells for research.

So what ethical violations did the Lacks family suffered as a result of the development of the HeLa cell line? Drawing blood in the 1970s from the family member participants without explanations that they would find adequate would certainly count. Otherwise? The genomic information of the HeLa cells has been published and is available. Is this an ethical violation? No. As I have long argued, genetic information about a person is not especially dangerous, occult or even interesting to most people:

While I have some sympathy for folks currently worried about their genetic privacy, I want to remind them that their genetic information is not some especially vital or dangerous kind of fact or knowledge about themselves. Such privacy regulations will needlessly reinforce unscientific notions of "genetic exceptionalism" among the public. And since the sorts of rules recommended by the commission have the habit of metastasizing into malignant bureaucracies (think here of HIPAA privacy regulations), I predict that most of us will regret adopting such a prohibition sooner rather than later.

Many years ago, I put my 23andMe genetic screening results online at SNPedia where they are regularly updated so that my friends and enemies can all find out what's genetically wrong (and right) with me. Consequences? None.

So what is Skloot advocating that has gotten me riled up? The government is proposing revisions to the Protection of Human Subjects rule that could possibly impose new and extensive consent requirements for using all sorts of biological samples derived from people. Skloot begins by asking readers if they want researchers to continue the practice of freely passing around cells derived from their bodies and the genetic information they contain? She then writes:

Tissues from millions of Americans are used in research without their knowledge. These "clinical biospecimens" are leftovers from blood tests, biopsies and surgeries. If your identity is removed, scientists don't have to ask your permission to use them. How people feel about this varies depending on everything from their relationship to their DNA to how they define life and death. Many bioethicists aren't bothered by the research being done with those samples — without it we wouldn't have some of our most important medical advances. What concerns them is that people don't know they're participating, or have a choice. This may be about to change. …

What's riding on this? Maybe the future of human health. We're in the era of precision medicine, which relies on genetic and other personal information to develop individualized treatments. Those advances depend on scientists working with vast amounts of human tissue and DNA.

So let's definitely get in the way of "the future of human health."

Back in 1990, the Calfornia Supreme Court ruled in the case of Moore v. Regents of the University of California that a patient did not own tissues and cells removed from his body as treatment for leukemia that were later used to create a lucrative cell line. In Moore's case, however, the researchers kept him coming back for blood tests over several years without telling him why. That is certainly unethical.

Since regulators must regulate (and bioethicists are generally quite enthusiastic supporters of regulation), perhaps the best we can hope for is what Skloot calls "broad consent":

When you show up to the doctor, you'd get a form saying, essentially, We want to store your tissues for future biomedical research; we can't tell you exactly what that research might involve, and you can't specify how your tissues are used. We may share your identity with other researchers, with privacy protections in place. And we may contact you for future research. Is that O.K.?

In other words, another worthless form attempting to enforce an alleged norm of genetic privacy that very few patients will bother to look at or will later care about.

So Yes. A thousand times Yes. It is O.K.!

Note: Did I mention that I wrote a book on the subject, Liberation Biology: The Scientific and Moral Case for the Biotech Revolution?

*William Buckley famously declared in National Review's 1955 mission statement that the magazine "stands athwart history, yelling Stop."

NEXT: Was 2015 The Year Libertarianism Died?

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  1. Property, not privacy.

    1. You certainly have property rights to your cells, but not to the genetic information contained within.

      1. but not to the genetic information contained within

        Why not? Biotech companies patent gene sequences all the time. Or are you saying that the patent belongs to our parents?

        1. Prior art would seem to invalidate those patents.

            1. The law is an ass.

              1. Warty, STEVE SMITH, the anony-bots…. yeah, I see what you mean.

        2. Biotech companies patent gene sequences all the time.

          I’m against… well all intellectual property, so I don’t think companies should be allowed to do this. I’m saying no one owns information, though they have no obligation to share any information with anyone else.

        3. You didn’t build that.

      2. phhhht! So some guy says I don’t own myself. What does he know?

    2. S: I find the reasoning in the Moore v. Regents decision I cited persuasive:

      Moore also attempts to characterize the invasion of his rights as a conversion–a tort that protects against interference with possessory and ownership interests in personal property. He theorizes that he continued to own his cells following their removal from his body, at least for the purpose of directing their use, and that he never consented to their use in potentially lucrative medical research. Thus, to complete Moore’s argument, defendants’ unauthorized use of his cells constitutes a conversion. As a result of the alleged conversion, Moore claims a proprietary interest in each of the products that any of the defendants might ever create from his cells or the patented cell line.

      No court, however, has ever in a reported decision imposed conversion liability for the use of human cells in medical research. … Invoking a tort theory originally used to determine whether the loser or the finder of a horse had the better title, Moore claims ownership of the results of socially important medical research, including the genetic code for chemicals that regulate the functions of every human being’s immune system.

      1. Regarding tort theory, I assume that’s one reason we have clear laws regarding title to (expensive) property like cars and land. For property of little to no immediate value, how do you draw the line between “lost” property and “discarded” property. After all, we’re all constantly shedding genetic material everywhere we go. It would be ridiculous to claim that I have a right to control what happens to a skin cell that I abandoned on the subway a decade ago.

        For cases where a doctor is directly drawing cells from a patient, why can’t the future of those cells just be handled with a contract?

        1. That was my thought, but Ron seems to oppose that for some reason.

          1. Because Bailey’s faith is in Science!

      2. I’d capture it under trespass and unjust enrichment. I don’t see how “social importance” grants an exception. If it is for “common welfare”, then society can compensate the individual owner. If a company sells the knowledge or object produced, it can compensate the individual owner. If the owner’s cells (or whatever) are generic then this limits the extent of the unjust enrichment, but leaves claims of trespass unaffected.

    3. I understand the distinction you’re making, which is connected to my thoughts upon reading this article: do I own my dandruff? For more than 15 years, forensic science has known that dandruff, like all shed skin, is a source of DNA. As technology improves, the amount of useful DNA that can be extracted from flakes increases. The Supreme Court ruled in California v. Greenwood that we have no expectation of privacy when it comes to our discarded trash. I assume when the time comes, if it hasn’t come already, that this principle will be applied to our discarded DNA.

      1. If the doc collects it from my trashcan, that is one thing. But a sample removed from my body isnt discarded trash.

        1. UNTIL I discard it, vis form or by doctor giving me the option to take it home with me.

          1. I agree. I was always the guy who wanted to bring home my extracted wisdom teeth too. That having been said, just by sitting in the doctor’s waiting room for 15 I discard 15,000 skin cells. If the doctor is really jonesin’ for my DNA, he or she can get it.

              1. HM: Perhaps in the realm of TMI: I did bring my extracted wisdom tooth home with me.

                1. There could be a correlation here.

                2. I have lost a tooth yet; they’re in the drawer over there.

            1. My wife got a hysterectomy this year, I wanted to keep her uterus and the thing that was growing on it but the doctor wouldn’t let me. All I got was a picture.

        2. Simple solution: ask for a doggie bag. Of course doc can charge you handling fees.

      2. No, HM, you DO NOT OWN YOUR OWN DANDRUFF!!!

        YOUR DANDRUFF IS ALREADY DEAD – AND BELONGS TO ME!!!

        MUUUUUHAHAHHAHAHAHAHAHAHAHAA….

        *finger pyramid of evil contemplation*

        1. No, no, my dandruff is not dead! It’s, it’s resting!

          1. It’s pinin’ for the fjords!

            1. There! It moved!

      3. HM: BTW, it is now possible to obtain sufficient DNA from a fingerprint for IDing suspects.

        1. Indeed. It’s easy to imagine that if informed consent procedures become too onerous, thanks to the legal precedent that there is no expectation of privacy or ownership of discarded trash, we might see biomed researchers sifting through the “trash” of shed skin cells and the like.

          1. That almost seems like it’d be more trouble than it’s worth. “Hey, i was going through the skin cells in your garbage, and i thought you might like to know that your gene profile shows a strong risk of susceptibility to a rare and aggressive form of melanoma. Also, you are apparently an opossum.”

      4. HM: I have doubts regarding that doctrine. There’s a difference between dereliction (derelictio, de-relinquere), meaning giving up one’s property (and not caring about what the hell happens to it, as long as one’s rid of it) and paying a third party to destroy your property (possibly dissolving it into components, see recycling). (Payment, by the way, can be seen in the valuable components.) The latter, in my view, should be the general assumption for garbage, more so for that in individually assigned garbage containers (e.g. standard household).

        1. Let’s say you throw out a manuscript. That’d give the garbage company no right to the written document; they’d even be obliged to destroy that written document. However, they could recycle the paper and use that recycled paper commercially.

    4. The problem with the idea that somebody taking something from you that has no value to you is not any kind of harm is that the value of something is supposed to be mutually-agreed upon. If I go to the doctor to have a wart removed I am willing to pay to have it removed because the wart has a negative value to me. If I know the doctor will sell the wart to a researcher for big bucks, I’m going to want to renegotiate the price of the wart removal. Not because the wart itself has suddenly become more valuable to me but because I know the wart is more valuable to someone else and I have no interest in negotiating some “fair” price as some philosopher-king determines a fair price but only in charging whatever the market will bear.

      Of course, I am totally onboard when those same philosopher-kings say it’s perfectly okay – noble even – for me to rent my body out for digging ditches but totally immoral and evil and wrong for me to rent my body out for sexual pleasure. And certainly it’s just plain wrong for me to sell one of my livers so that somebody else may live.

        1. See upthread;
          “Not all of us are “naturally occurring”, Ron.”

          1. I’m just in awe of his potential drinking ability.

            1. Maybe he just has a few extra….with some fava beans too.

        2. I try to keep a spare at all times.

        3. He’s got a guy. A liver guy.

      1. “… to sell one of my livers so that somebody else may live.”

        We need to talk.

        *pours another vodka*

  2. Not necessarily arguing with Robby. But a question:
    Many of us in the broad libertarian leaning community favor the right of people to donate organs (and tissue) for profit. After all, it is “my body”. So where do we draw the line between organs, or blood cells.
    Or to ask it another way, if I pay the landscapers to mow the lawn, that doesn’t necessarily give them the right to keep the toys my kids left on the grass.

    1. Do they get to keep the clippings?

    2. BO: One of my first free lance articles for Reason argued for organ markets way back in the early 1990s. So I am among those libertarians who support that right of people to to voluntarily sell their non-vital organs.

      1. But not blood samples?

        How is it different?

        1. As I see it: your organs, blood, dandruff, etc, are all yours as long as they are part of you. Once you discard them, they are just trash. If you want to accept payment in return for donating a spare kidney, that’s fine. But if you just want rid of it someday and discard it after the surgery, then it’s finder’s keepers.

          Not having read Moore, I would say that the crime was taking blood samples for no reason, in effect lying to Moore about why they were taking them — not to benefit him with analysis, but to benefit their research.

          Just like furniture in your house — if you put it out by the curb, it’s fair game to anybody. But until you do, coming in to your house to take it is theft.

          1. Having them extracted at docs office != discarding, as Ron’s wisdom tooth admission above shows.

            Have a form with two options:

            1. Discard and docs can use as they please
            2. Take it home and deal with it yourself.

            1. Well of course! Just because you hire movers to take your furniture out of your house, or an appliance repair shop to temporarily posses some appliance, or have your car towed to a shop, does not mean you have discarded them.

              When a doctor draws blood, you get some say in what happens to it, but how many people would want to be bothered with the choice? How many people care that their old alternator is turned in by the mechanic to get a credit, or that old tires can be sold for a few meager bucks?

              1. It’s very hard to guess at this point what the value of genetic information will be in the future. Our ability to understand the genetic or especially epigenetic code is still in its infancy.

                What if, using epigenetics, we can tell that you have used an illegal drug? Do you care about it now? This is definitely not outside the realm of possibility.

                1. The current trend is towards increasingly understanding the genome and being able to modify the genome. If we ever get to the point that we understand all possible combinations of genes, then a person’s genetic material will have no value to researchers. If we get to the point that people can modify their genes at will, then linking a particular sequence to a particular person will also have no value. So, eventually, I expect your personal genetic information will once again have no value at all.

                  1. Even if it is ever feasible, people won’t be totally remodeling their genomes, especially not every other week in order to stay genetically anonymous.

                    As jerryskids said elsewhere in this thread, it’s just not safe to assume that individuals’ genetic information is worthless to them. Even if we can’t decode it right now, the (epi)genome contains information about one’s ancestry, life history, and traits.

                    This all strikes me as similar to the argument that collection of metadata isn’t a big deal because it’s supposedly not informative. These are judgments I don’t think the state should be making.

          2. “If you want to accept payment in return for donating a spare kidney, that’s fine.”

            Wait…I could have gotten paid?!?!!!

      2. I’d extend that to vital organs as well. What if a terminal brain cancer patient wants to make sure his family is taken care of?

        1. Or even have the estate sell vital organs of healthy accident victims.

          1. This would probably cause a boom in research for preserving organs long term that would benefit everyone.

    3. I think I’m gonna just get hold of a stillsuit, so that NONE of my DNA gets ‘discarded’ for harvesting by the genethieves.

  3. As I have long argued, genetic information about a person is not especially dangerous, occult or even interesting to most people

    Many years ago, I put my 23andMe genetic screening results online at SNPedia where they are regularly updated so that my friends and enemies can all find out what’s genetically wrong (and right) with me. Consequences? None.

    Well, I hope you don’t make too many enemies in law enforcement, because your genetic information is now available to LEOs who want to tie you to crimes.

    This also goes for people who don’t intentionally make their DNA public. Sending a blood sample to 23andMe invokes the third-party doctrine.

    1. Hey Nicole, are you done with that glass of water?

      (mails glass to FBI)

    2. See above regarding DNA in the rubbish bin. At what point does it make a difference?

      1. AFAIK, there are laws forcing you to let the doc keep whatever he slices off of you – it’s now considered hazardous medical biowaste and if you take that inflamed appendix home with you there’s no telling what sort of terroristic hijinks you may get up to with it. Can you imagine a crowded rush-hour subway train and suddenly some Mohammedan in a suicide vest of inflamed appendixes (appendici?) threatens to burst them all at once? So when the government tells you abandoned property is not yours any more and then forces you to abandon the property, it’s a rigged game.

        Look at blood banks and sperm banks and egg banks – it is legal to sell your blood and your sperm and your eggs. Why not the same thing for whatever the doc plans on shopping off of you?

    3. JsN: Yes. I am quite aware of the issue. Back in 2009, I reported that some Israeli researchers had showed that it would be possible to use fake DNA to salt a crime scene.

      1. Great, so DNA is about to become as useless as bite marks in finding criminals?

        Also, with genetic modification technology coming along won’t someone just be able to change their own DNA after committing a crime to escape screening?

        1. On a related note and related to the piss test thread yesterday, I only one time had to do one when we had a contract to do some business with the state. When I went in I asked the guy what happened to the sample after they tested it and he didn’t know so I insisted on seeing a higher-up who could assure me they simply tested it and then discarded it. They thought I was nuts (or possibly really, really high) to worry about what they might be doing with the sample after they tested it. Was I some sort of conspiracy nut that thinks the government is building some sort of secret DNA database for god-know-what nefarious purpose? Why yes, yes I am – except that if you paid attention to the news you know it’s not some conspiracy theory that they’re doing it. Nobody really knows what the value of that DNA may be, but they know the science is still in its infancy and somebody someday is going to figure out how to monetize or weaponize it. (Remember that IBM allowed Bill Gates to keep the rights to DOS because hey, what’s the possible value in that particular code? What possible value could there be in your genetic code?)

        2. “Also, with genetic modification technology coming along won’t someone just be able to change their own DNA after committing a crime to escape screening?”

          That’s not how that works, assuming you mean the genetic modification tech coming along in the near future, with CRISPR and the like. It won’t enable us to change the genes of fully grown adults.

          Science ain’t magic, yo.

          1. Actually, you can change the genes of adults using viral vectors, but it would be virtually impossible to change every cell, or change your genome so thoroughly that it would be unrecognizable by any test.

            1. Things that are at one time considered virtually impossible have a habit of eventually becoming possible, then common. Where there’s a will, there’s a way.

  4. More suggested reading on this subject:

    Next, by Michael Crichton. Parts of it were obviously inspired by the Moore vs. Regents case cited here. But, as usual, Crichton took things to a very entertaining extreme.

    1. sg: I reviewed Crichton’s Next for National Review (but can’t find it on their site now), but I did later note:

      In his follow-up, the biogenetic tale Next (2006), Crichton presented a wicked corporation engaging, as usual, in all manner of skullduggery. But he turned his customary Frankenstein formula on its head by ending the novel with a vision of a happy trans-species blended family, including a multi-lingual African gray parrot and a 4-year-old humanzee. He presented them as pretty normal for the 21st century, and didn’t seem disturbed by what he was describing. …

      Over the years Crichton and I had a number of friendly interactions as our paths crossed at various conferences. In Next, Crichton kindly mentioned my 2005 book Liberation Biology, praising it as “the clearest and most complete response to religious objections to biotechnology.”

      1. If i recall correctly, one of the plots involved a man who had a beneficial genetic mutation which the wicked corporation patented and then tried to sue him and his family for possessing; that plot ended kind of anticlimactically, with the guy simply winning his case.

      2. So when do we have to start providing safe spaces and separate bathrooms on campuses for humanzees?

        1. As soon as you decide you DON’T like having your arms ripped off, friendo.

          1. Did I ever tell you about the time I was peeing at a urinal in a bathroom located in a national park in Thailand and some sort of monkey came waltzing in right beside me. The thing was at least 3 feet tall when standing on its hind legs. If I didn’t know any better, I would have expected it to start peeing in the urinal next to me.

            1. Damn! My brain is all frozen up because it can’t decide which macaque joke to use.

              1. Looking at pictures of macaques, it was definitely some type of macaque.

                1. Do you like looking at pictures of macaque, HM?

            2. “Knowledge of music… knowledge of literature… knowledge of… knowledge of… you’re an interesting man there’s no doubt about it.”

              1. General Allenby: You acted without orders, you know.
                T.E. Lawrence: Shouldn’t officers use their initiative at all times?
                General Allenby: Not really. It’s awfully dangerous.

            3. I love countries where they just let monkeys roam around freely. I’ll bet that one was just seeing if you had any food. I’m guessing you didn’t, otherwise the story would have had a different focus.

  5. Typo. “Back in the 1990,…” paragraph has “voer” rather than “over.”

    Fantastic article.

    1. “Voer” – Dutch for forage.

  6. Maybe you are just having fun with NR, but I don’t think it is at all fair to compare Buckley’s NR Mission statement to people like Skloot. Based on the article he wrote in 1955, and everything else that I know of his life and views, when he said the magazine “stands athwart history, yelling STOP”, it seems he was referring to what the Left refers to as “progress”. That sort of Marxist view of the inevitable march towards (insert own leftist dogma here). Not against new developments per se, but the throwing away of the very foundations of reason and individual liberty.

    I guess I just don’t see the connection here at all.

  7. My understanding is that the lady the HeLa cells were taken from was extremely poor. The fact that her cells could survive where other cultures couldn’t proved to be immensely valuable to the biotech industry as attested to by the fact that her cells came to predominate in research.

    There is an ethical question about people using this woman’s property without compensation or her consent to make a profit.

    My understanding is that this woman’s family languished in poverty even as significant technologies came to market using her cells. I think those cells were her property, and using her property without consent (or compensation) brings up the same ethical questions as using any of her other property would without her knowledge or consent.

    1. Too lazy to Google it, but didn’t Peter King or one of the other scumbags say in re the NSA shit that it’s not an invasion of privacy if you don’t know they’re invading your privacy?

  8. KS: The fact of being poor has no bearing on the question of whether or not something or another is property that is owned by someone, right?

    1. Self-ownership and consent are the driving forces in libertarian ethics.

      Surely, there wouldn’t be much of a discussion if this woman had consented.

      And asking for consent concedes self-ownership, doesn’t it?

      From a utilitarian perspective, using this woman’s property may be justifiable because doing so helped so many.

      But if I were going to argue that side of the debate, I would’t denigrate her self-ownership. I’d just argue that the ends justified the means–and the means were painless to her.

      But it wasn’t exactly painless if licensing her DNA might have lifted her children out of poverty–and if her poverty mattered, that’s why. In any other patent infringement case, would the judge say, “Well, you probably would have sold out low if you’d consented anyway”? Or does the judge say, “Here’s how much they made from violating your patent”? If you want to avoid legal responsibility for patent infringement, you get consent. If you want to avoid ethical responsibility, you should do likewise.

    2. The fact that somebody is poor has a hell of a lot to do with ethics and morals to some people. Who needs 23 kinds of deodorant when children are starving, amirite? But discussing ethics and morals as it relates to DNA and cells and tissue samples and building it on a framework of the existing medical ethics seems a bit short-sighted. Let’s take a step back and ask where are the morals and ethics in one group of people taking upon itself to declare what is ethical and moral for everybody else? Conducting experiments on people without their knowledge and consent? Of course that’s immoral and unethical. Allowing people to sell their organs? Of course that’s immoral and unethical. How do I know being allowed to sell your organs is immoral and unethical? Because the same people who said it’s immoral and unethical to conduct experiments on people without their knowledge and consent are the same ones who said it’s immoral and unethical to be allowed to sell your organs. And they’re closely related to the people who declared it immoral and unethical to eat that kind of mushroom but not this one, smoke this kind of weed but not that one, ingest derivatives of that sort of chemical compound but not this one. Why and how do you accept that these people speak with authority on this issue but not that when they themselves say they speak with authority on both?

      1. “The fact that somebody is poor has a hell of a lot to do with ethics and morals to some people. Who needs 23 kinds of deodorant when children are starving, amirite?”

        Just for the record, that wasn’t what I was saying at all.

        The fact of her poverty runs contrary to the suggestion that not asking her for consent and not compensating her didn’t actually have any negative impacts on her.

        She never had a better chance to see that her family was lifted out of poverty, but she was never given the opportunity to make that choice.

        1. The value of her cells were not discovered until a later date. If she had been compensated on the time the payment would have been from not enough to cover lunch to free. Her family saw more money due to the cells gaining value from study before receiving compensation.

          1. The argument about how much she should be compensated and the argument about whether her consent should have been obtained are two separate arguments.

            If you’re ready to move on to the penalty phase, does that mean you’re conceding that what was done to her was wrong?

  9. I am guessing most people would think that tissue samples taken from them would be destroyed after use and that they had not given the doctor ownership and consent to experiment on their tissuesby consenting to these tests and procedures.

    The medical community seems to have been skirting informed consent and property rights for decades. While the harm may have been nominal, I find the appeal to Science! as the higher ethic a bit creepily collectivist.

  10. There should be a form along with all the others you sign in the doctors office handing over the right to use your cells as part of scientific study. There you go ass covered.

  11. Ron, I know you are Virginia-based. A while back Style Weekly (yeah, I know, always fact check them) did a story about a black woman whose cell cultures were harvested at MCV (Medical College of Virginia, now part of VCU) and used in medical research for decades without her knowledge. Was an interesting read.

  12. OK, so knowledge of dna testing company. They have; A) a ton of basic allele data about people tested, B) less but, still a small shit ton of dna in form of collections or extracted dna, analyser data.

    Who owns it?

    I gave it to you for a test or under state coercion.

    Who owns it?

    When the feds knock on the door.

    Who owns it?

    Simple constitutionalist. I own it. Its covered under 4th papers, etc
    Simple libertarian. I own it, I never surrendered my ownership when I asked for testing.

    Or is there paperwork that says I did? I know the paperwork. I didn’t surrender ownership in it. I suspect most other lab tests would read the same. Unless they do. No one can use it for other than the reason specified in the testing request.

    Not sure that I care if its for the greater good or not. But that is not a libertarian concept anyway.

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