Author Archives: Harrison Pire

Cyber bullying covid edition

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This week’s article deals with the ethics and efficacy of Covid-19 “public-shaming” through social media. The article presents two types of activity that might fall into this category. At one end of the spectrum is a tweet from New York mayor Bill DeBlasio, which provided the name of one of the first attested Covid cases in New York City, Lawrence Garbuz. The mayor’s stated purpose in the tweet was to inform the public of the case and facilitate contact tracing. Nonetheless, he was criticized for violating Garbuz’ privacy. 

At the other end of the spectrum are the majority of the anecdotes presented in the article. These describe social media activity that is specifically intended to harm the reputation of or cause mental anguish to the individual with Covid. This activity includes online harassment of the supposed “patient zeros” in Vietnam and Poland and later harassment of Garbuz and his wife. Much of this second type of activity is clearly either malicious or an attempt to vent frustration. It can’t solve the immediate problem in question, though it might, as the author mentions, compel others to behave more cautiously in the future. 

Though DeBlasio’s actions would seem to violate patient privacy, we might ask how any large scale contact tracing scheme could operate if it relied on voluntary disclosure alone. Tweeting the information clearly wasn’t the most effective or respectful way of communicating it, and a more tailored approach seems to be called for. Still, how much authority over disclosure should we give to individual patients? The second type of behavior seems inherently more objectionable, but can we really systematically restrain it or would we want to if we could? Posting social media critiques is not a violation of privacy rights as long as the person posting was not given that information in a privileged context. The danger of being subject to online attacks might prove to be a valuable deterrent especially to high profile individuals such as the social media influencers in the article or the former chief advisor to UK Prime Minister Boris Johnson who was recently forced to resign in part because of his violation of Covid regulations [see: https://www.economist.com/britain/2020/11/13/dominic-cummings-boris-johnsons-chief-aide-stands-down]. 

It might be necessary to ask what privacy requirements we should insist upon in the publication of test results during a pandemic? Under the circumstances, allowing for someone to withhold information might pose a significant public health risk. Should we make an agreement to public disclosure a requirement given limited testing sources? Should we fully subsidize published tests but not tests whose results might be withheld? Finally, even though the anecdotes in the article demonstrate the serious damage that can result from public internet shaming, how much weight should we give to this in view of the opposite tendency of many, especially in this country, to deny the reality of Covid? Is forceful criticism of potentially dangerous behavior justified in an environment when people might otherwise be inclined to dismiss the problem altogether? 

Yong’s “Anatomy of An American Failure”

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One of Yong’s more interesting characterizations 

is to describe the Trump administration as a “COVID-19 comorbidity.” We haven’t looked that closely at the liability of the state in either administering or providing healthcare. Yong emphasizes that the American healthcare system is particularly susceptible to breakdown in situations of pandemic due to its largely private character. Most hospitals try to limit their baseline staffing and capacity given the economic exigencies of running a private hospital. They tend to be prepared for treatments that have been provided recently or would be more profitable generally. 

At the same time Yong rightly points out that many of the world’s most able and expert medical practitioners work in the American hospital system and/or domestic scientific research. He thinks that the inability and unwillingness  to tap this resource of expertise was not only unfortunate but also a direct contributor to the deaths of many. For superficial political reasons, the Trump administration removed American WHO appointees who had been present in China not long before the Covid outbreak and. In addition, predictions of pandemic which had been provided to the administration by people such as Yong himself, had been shelved for reasons that had yet to be explained. This otherwise inexplicable behavior was only exacerbated by the Trump administration’s response to the foreign and then domestic spread of the virus which was to suppress evidence of its transmission and to restrain any effort on the part of a federal agency to provide coherent policy in the early stages of the pandemic. 

All of this is clearly evidence of mismanagement and politically inspired equivocation. Yong makes the additional statement — which is incredibly relevant not only to our assessment of this historic event but also to the liability of current government officials — that the Trump administration was a comorbidity just as smoking might have been. Since tobacco companies and insulation manufacturers have been found liable for deaths resulting from their negligence. Might it also be possible that those who administer public health policy might be liable for negligence when they suppress information about the danger about a situation that they’re responsible for or promote public health policy that is not reasonable given how informed they might be of the relevant scientific data. Why should a physician be culpable for malpractice but not a public health official who is also compensated for his or her work and therefore has an obligation to conduct him or herself without negligence. There are two possible ways of understanding this failure. One is in the structural sense in which the American healthcare system is poorly equipped to deal with a pandemic because of the profit motives that are ultimately most determinative. We could also assess liability in a more specific way by looking at particular individuals who have been tasked with administering policy which is not political anymore than the treatment of a given doctor is political, but should be assessed according to medical health criteria. Rarely before has there been such medical disregard in the midst of such a health crisis, but this might provide incentive to articulate a more coherent policy of oversight for public health officials. 

Part 3 Skloot

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Part III of the book periodically broadens its scope beyond Henrietta’s case to include other controversial instances of scientific testing and the commercialization of results. In particular, Skloot talks about the 1984 case Moore vs. Regents of University of California, which involved patents awarded on a cell line derived from the plaintiff, John Moore. This case addressed two interesting issues that have arisen throughout the book. First, to what extent can we own biological material and its products; second, are we entitled to compensation for or control over the use of our own biological material.

 Just as in Henrietta’s case, Moore was not informed that his tissue was being experimented on nor that it would be shared with other researchers or put to any use other than his own personal treatment. In fact, he seems to have been told by the physician Golde that it would not be used in any work of commercial value, even though Golde later patented the cell line and entered into an agreement with a biotechnology company to develop marketable products from it. The first question here whether the biological entity — the cell line — could be “owned” at all. Normally, US patent law states that naturally occurring biological entities cannot be owned for the purposes of patent protection. However, the Supreme Court case Diamond v. Chakrabarty determined that biological entities that are not naturally occurring and “only existed because they had been altered using ‘human ingenuity’” could be patentable inventions, referring in this case to a genetically engineered strain of bacteria that was unique in its ability to consume petroleum waste. Similarly, since cell lines must be cultivated through complex procedures and do not occur naturally outside the body, they can be patented as new and useful inventions, according to the Moore case. As a consequence, the doctor who developed Moore’s cell line held property rights in the line that he could sell for profit. 

The other question in Moore was whether the original human source for the tissue also possessed property rights in it.  Certainly, tissue that is part of a person’s body is her possession, but once it leaves the body, the issue becomes more difficult. The California Supreme Court ultimately ruled against Moore, and stated that although the doctor was wrong not to inform Moore of the university’s intentions, Moore still did not have any ownership in his tissue after it left his body. 

Skloot tells us that this remains the law since no legislation has since adjusted these criteria. Clear requirements of informed consent or disclosure of future use have not been established, and the failure to do so does not undermine a research team’s patent rights of a. Interestingly, in the afterword, Skloot points out another patent case that seems to be slightly different from Moore and Chakrabarty. She mentions a lawsuit brought in the year she published the book (2009), against Myriad Genetics, which possessed the patent on two genes crucial to breast and ovarian cancer diagnosis. Skloot points out that these patents have given Myriad a monopoly on genetic testing for these genes that has artificially inflated the prices and inhibited outside research and the advancement of competing analyses. This would seem to violate the  medical researcher’s ethical responsibility to facilitate the possible treatment for patients. 

Interestingly in 2013, the Supreme Court decided against Myriad (see below link), though not because of the ethical concerns above. Instead the Court found that unlike the bacteria in Chakrabarty, the DNA sequences isolated by Myriad were not patentable inventions because they had not been altered using human ingenuity. The sequences were identical to those that could be found in a human chromosome in nature and were not altered as a consequence of being isolated from the rest of the DNA on the chromosome. It’s would be interesting to see what impact this decision might have on cases like Henrietta’s; it removes one type of biological entity from patent protection but seems to very much recognize other rights, like those in a cell line. Also it didn’t seem to address any of the ethical and public policy issues that are so relevant to Skloot’s book. For those who might seek real long term reform in this area, the courts don’t seem to offer a tremendous amount of hope even though Myriad had a relatively positive outcome. Might the attention that seems to be growing for these issues eventually lead to further regulation by Congress on the questions of ownership and consent? 

The Genes You Can’t Patent

Part 1 Locks

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Part 1 of the book touches on many of the major bioethical themes that we’ve discussed so far, including patient autonomy, informed consent, and equity in access. One initially striking thing is the way that Johns Hopkins seemed to offer unusual equity in access to health care for poor and African American patients. “Hopkins was the only major hospital for miles that treated black patients”; even though it was one of the top hospitals in the country, “its public wards…were filled with patients, most of them black and unable to pay their medical bills” (15). Skloot points to Hopkins’ historical origins as a charity hospital for the sick and poor; it certainly seems to have offered medical care that — according to the expectations of the time and the values of the medical profession — offered something like a real commitment to distributive justice. 

However, as we move through the reading, we see another reason why broad access to care might have been provided at Hopkins. In exchange for treatment, patients were essentially expected to forfeit their patient autonomy and right to informed consent. It seemed to be an operating assumption at the hospital “that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment” (30).

Herietta’s case exemplifies this. First of all, the “operating permit” that she signed before her treatment would not qualify as informed consent under Canterbury vs. Spence or any other test. This was a generic waiver for all procedures that the doctors might decide on at any point in the future; she would have no knowledge of and no role in deciding specific interventions (31). In addition, she was apparently not informed that the result of her treatment would be infertility (46). Even though information about hysterectomies was supposed to be provided at the time, it seems that black patients were often just not told. Their agreement was not considered necessary, an especially extreme form of paternalism (“benevolent deception”). Henrietta also had no knowledge that her cervical tissue would be cultivated and used in experiments by doctor Gey. Autonomy over her own tissue and how it  might be used was not recognized. 

Also, Henrietta was denied ownership over and financial stake in her physical and genetic material, which has since been used in countless experiments and to make countless people wealthy. In the book, Henrietta’s family seems angry both that she never received recognition and that there was no effort to remunerate her family for the financial gains from her tissue. As Henrietta’s story becomes more widespread, it’s interesting to think how it might affect decisions about how people are paid for their contributions to medical experiments and the results of those experiments. Could we one day patent our own DNA or tissue and hold a certain ownership over it for the purposes of research and resultant products and procedures?

Concept of Informed Consent — A reflection on Faden and Beauchamp

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In the article “The Concept of Informed Consent,” Faden and Beauchamp discuss two ways of understanding informed consent: informed consent as autonomous authorization and informed consent as effective consent. The first sense of informed consent would require that a specific patient actively agree to a given procedure; to simply acquiesce — the way someone might acquiesce to punishment that she does not desire — is not sufficient. Instead, the patient must autonomously authorize the procedure 1) knowing the nature of the procedure, 2) not being controlled in her decision making, 3) intending to undertake the specific procedure, and 4) saying “yes” explicitly. This idea of informed consent would seem to require some discernible mental event in the patient; its identification might be very fact specific. Faden and Beauchamp distinguish this type of informed consent from that of “shared decision making” because informed consent does not require that the patient participate in the identification of possible treatments. It simply requires a clear and autonomous decision to go forward with one of the treatments presented by the doctor. 

The second sense of informed consent is as effective consent; this means that the physician has accorded with procedures that satisfy the rules in a particular medical context. Here the doctor must satisfy disclosure and competency rules. He must, for instance, tell the patient what the procedure is and the possible outcomes that might result. He must also make sure that the patient is of age and mentally competent. However, there doesn’t necessarily need to be some autonomous mental event within the patient in order for the doctor to proceed. Faden and Beauchamp find the second option less satisfying philosophically because, instead of getting at whether informed consent truly took place, it simply provides a framework by which to make inferences about possible consent. It gives circumstances that often go along with consent rather than necessarily identifying it in a given case. I agree that Faden and Beauchamp’s first sense is more philosophically compelling because it requires the showing of autonomous consent under particular circumstances. On the other hand, the second theory might be a more efficient legal test, because it doesn’t require as much scrutiny about the patient’s state of mind (which is difficult to identify) and instead gives certain observable criteria — such as age, mental capacity, or sobriety — that can stand in for autonomy, understanding, and intentionality.