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Medical Privacy and the Public’s Right to Know

photograph of President Trump with face mask giving thimbs up from within SUV

When I first heard that President Donald Trump tested positive for COVID, I began following the regular updates about his condition. I read through the updates from his doctor, I checked the dates on his previous COVID tests to determine when he was probably infected, I cross-referenced the results of his medical tests with what actuarial data exists for COVID cases, and I regularly checked in to see if President Trump’s condition was improving or worsening.

Or, more precisely, those were all things I wanted to do. Why didn’t I do them? Because the White House did not release detailed medical information. We got some minimal updates about the president’s conditions, but those updates were devoid of specifics and often inconsistent.  This bothered me, and I immediately added this to the tally of ways the Trump administration has been insufficiently transparent.

I was upset with the White House, I felt they were doing something wrong by not being more transparent. I felt like I had a right to know about my president’s health condition! Not only that, I felt I had a right to know about the health condition of a current presidential candidate less than a month from the election. I felt that President Trump, as both the sitting president and a presidential candidate, did something wrong by not releasing details of his condition to the public.

But is my feeling that the president had such an obligation of transparency correct? There is an extensive academic discussion of this very question. To what extent do candidates retain rights to medical privacy, and to what extent does the public gain a sort of moral right to medical transparency? That is the question I want to consider here.

Normally people do not have an obligation to disclose private medical information. That is true even if that information is materially significant to others. Certain illnesses could perhaps compromise my ability to teach at FSU — FSU thus has a real interest in knowing the results of my medical tests. That does not mean I have an obligation to send FSU that information. If I decide I can no longer do my job, then I should let FSU know and possibly I should resign. But if I think I can continue my work, FSU does not have some right to the same medical information so that they can make their own determination. My interest in medical privacy supersedes their interest in my medical history. FSU can fire me if the quality of my work suffers. But they don’t have a right to my medical information so that they can preemptively decide if they think my work will suffer.

Now, there are limits to our medical privacy. If diagnosed with HIV, one ought to disclose that diagnosis to prior sexual partners. Similarly, in cases of medical emergency, the state might need to violate medical privacy to prevent the spread of a highly infectious disease. Even in those cases, however, it is still reasonable to maintain as much privacy as possible. Following a COVID diagnosis, you might be justified in telling people I’ve been around that they may have been exposed to COVID-19. But that would not justify you telling others whether or not I was given supplemental oxygen.

So what explains my intuition that the president should release the details of his medical tests and treatment? It is something about the difference between me and the president. The first difference that comes to mind is how much more important the president’s work is. President Trump’s decisions are more influential. As such, perhaps there is a large enough public interest to override claims to privacy.

That explanation does not quite capture my moral intuitions though. I don’t just intuit that President Trump has an obligation of transparency, I also intuit that the President of Malta has an obligation of transparency to the people of Malta. I don’t, however, intuit that Jeff Bezos has an obligation of transparency, even though Jeff Bezos almost certainly has far more power and influence than the President of Malta.

So if President Trump has a special obligation of medical transparency, that must be because of his governmental role. It is not that President Trump is more powerful than I am, but that President Trump can act with the coercive force of law. Put another way, President Trump is actually two persons. He is the private person of Donald Trump and also the public person of the President of the United States. President Trump can act as a private person, such as when he gives his children Christmas presents or writes personal letters to friends. President Trump can also act as a public person, such as when he signs laws or writes letters to foreign dignitaries on behalf of the United States. Indeed, it is precisely my distinguishing these two persons that we can make sense of concepts like political corruption. An act is corrupt when a politician uses their public function for a private purpose.

And indeed, we do think that President Trump retains privacy interests over his personal letters in a way he does not over letters he writes as the head of state. So, perhaps in the private person of Donald Trump deciding to run for the President of the United States, he forfeits certain privacy interests due to the demands of public transparency that a democratic electorate have over the head of the executive. Perhaps because the government acts with the consent of the governed, informed consent implies the public has special rights to know.

This seems like the strongest case for why President Trump, unlike myself, might have special obligations of medical transparency. There is, however, a powerful argument against norms of medical transparency. One of the interests we have in medical confidentiality is that it encourages people to seek out healthcare. If I know my doctor will keep a, potentially damaging, diagnosis secret, then I am more likely to go to the doctor. Presidents are political creatures; they need to factor in public reactions to what they do. Thus, a politically savvy politician might well be unwilling to undergo certain medical tests if they know there is a norm of disclosure. And this might be especially concerning for someone in a position as important as the President of the United States. The medical ethicist George Annas has argued that in general “we should encourage our leaders to seek such help whenever they feel they need it, both for their own sakes and for ours, and protecting their medical privacy is essential if this is to happen.” If presidents were morally required to disclose consultations with a psychiatrist, then presidents will be much less likely to consult them. Having the ‘leader of the free world’ unwilling to consult with medical professionals, however, is a scary place to be. We don’t want a president refusing needed supplemental oxygen just because they fear the consequent political blowback. The best way we know to prevent that, however, is maintain strong norms of medical privacy.

It seems reasonable to think that one might forfeit a deontological right to medical privacy by running for president. But it also seems reasonable to think that there are independent reasons to maintain norms of medical privacy that go beyond merely personal rights.

 

Oh, and a quick postscript for those readers who have never watched The West Wing. It is a great show, and the third season largely deals with questions of medical privacy and the public’s right to know.

Corporate Responsibility and Human Rights: DNA Data Collection in Xinjiang

photograph of Uighur gathering

Since 2006 China has engaged in a large-scale campaign of collecting DNA samples, iris images, and blood types in the province of Xinjiang. In 2016, a program under the name “Physicals for All” was used to take samples of everyone between ages of 12 to 65 in a region home to 11 million Uighurs. Since the beginning of the program, it has been unclear whether the patients were at any point “informed of the authorities’ intention to collect, store, or use sensitive DNA data,” raising serious questions about the consent and privacy of the patients. The authorities largely characterized the program as providing benefits for the relatively economically poor region, with a stated goal: “to improve the service delivery of health authorities, to screen and detect for major diseases, and to establish digital health records for all residents.” Often accompanying program coverage were testimonies describing life-saving diagnostics due to this program. Despite being officially voluntary, some program participants described feeling pressured to undergo the medical checks. The Guardian reported numerous stories in local newspapers that encouraged officials to convince people to participate

Once a person decided to participate and medical information had been taken from them, the information was stored and linked to the individual’s national identification number. Certainly, questions concerning the coercive and secretive nature of the campaign arise as the government is collecting a whole population’s biodata, including DNA, under the auspices of a free healthcare program. In addition, this is a gross violation of human rights, which requires the free and informed consent of patients prior to medical interventions. The case is especially troublesome as it pertains to Uighurs, a Muslim minority that has been facing pressures from China since the early 20th century, when they briefly declared independence. China is holding around million Uighurs in “massive internment camps,” which China refers to as “re-education camps” (see Meredith McFadden’s “Uighur Re-education and Freedom of Conscience” for discussion). According to The New York Times, several human rights groups and Uighurs pointed to the fact that Chinese DNA collection may be used “to chase down any Uighurs who resist conforming to the campaign.” 

To be able to ensure the success of this campaign police in Xinjiang bought DNA sequencers from the US company Thermo Fisher Scientific. When asked to respond to the apparent misuse of their DNA sequencers, the company said that they are not responsible for the ways the technology they are producing is being used, and that they expect all their customers to act in accordance with appropriate regulation. Human Rights Watch has been vocal in demanding responsibility from Thermo Fisher Scientific, claiming that the company has a responsibility to avoid facilitating human rights violations, and that the company has an obligation to investigate misuse of their products and potentially suspend future sales.

Should transnational actors, especially those providing technology such as Thermo Fisher Scientific, have a moral responsibility to cease sale of their product if it is being used for “immoral” purposes? One could claim that a company that operates in a democratic country, and is therefore required to follow certain certain ethical guidelines, should act to enforce those same guidelines among their clientele. Otherwise they are not actually abiding by our agreed-upon rules. Other positions may demand the company’s moral responsibility on the basis of obligations that companies have to society. These principles are often outlined in company’s handbooks, and used to keep them accountable. These often stem from convictions about intrinsic moral worth or the duty to do no harm.

On the other hand, others may claim that a company is not responsible for the use to which others put their goods. These companies’ primary duty is to their shareholders; they are profit-driven actors which have an obligation to pursue that which is most useful to itself, and not the broader community. They operate in a free-market economy that ought not be constrained simply as a matter of feasibility. As Thermo Fisher Scientific notes, “given the global nature of [their] operations, it is not possible for [them] to monitor the use or application of all products [they’ve] manufactured.” It may be that a company should only be expected to abide by the rules of the country it operates in, with the expectation that all customers “act in accordance with appropriate regulations and industry-standard best practices.”