Of Risk and Gene Drives

A few weeks ago, I attended a panel on gene editing at Harvard Medical School that covered some aspects of the science, ethics, and law of the practice. It was an interesting talk, in part because it largely covered the ethical issues of gene editing for human medicine and in other species as two sides of the same coin, rather than as fundamentally different conversations, as they are often treated.

Indeed, one member of the audience asked why there is so much focus on the safety and ethics of human gene editing, when the stakes, he argued, are much higher in the use of gene editing for environmental engineering. A botched human germline edit could harm a family; a botched gene drive could kill us all. It’s an interesting point. And because it suggests that we may want to be less than sanguine on the use of gene drives to eradicate malaria, on which I have previously been extremely sanguine, it is a point worth responding to. Read More

Image of a laptop showing a doctor holding a stethoscope. Telemedicine abstract.

How to Think About Prognosis by Telemedicine

Recently in these very pages, Evan Selinger and Arthur Caplan responded to an article in which Joel Zivot defended the use of telemedical technologies in informing patients and their families of dire news, in the context of the viral story of a doctor informing the family of Ernest Quintana of his imminent death via robotic video-link. Zivot argued that the use of technology to deliver such news is not the problem and what matters is the communicative skills of the physician. Selinger and Caplan respond that patients have basically different views on the propriety of using technology in these ways, and urge a regime of informed consent.

Selinger and Caplan are probably right on the short term policy question.

While we know there is a great deal of diversity in whether people think using telemedicine in this way is disrespectful, there is also no obvious answer among the alternatives. Warning people that this might happen and letting them opt-out, then, offers a short-term way to respect people’s preferences. And, as Selinger and Caplan acknowledge, that may be all that is needed. Over time, communication like this may become as anodyne as today it seems avant-garde. Read More

No One Is Sovereign Over Genetic Sequences

Most of the time the sanctity of national sovereignty is invoked in international law, it’s covering for something bad. The debates about the interpretation of the Nagoya Protocol, a 2010 supplement to the Convention on Biological Diversity, are no exception.

A number of states party to the Protocol, a cryptic document designed to ensure the “fair and equitable sharing of benefits arising from the utilization of genetic resources,” enshrines a principle of state sovereignty over the genetic sequences of all life—including those of pathogens—within state territory.

This interpretation is not obvious on the face of the treaty. But neither is it foreclosed. The resolution of this question has profound implications for global public health: if the states that espouse this position are right, global genetic research will be impeded, possibly dramatically, and epidemics will be harder to fight. Read More

Close up of a mosquito sucking blood on human skin. This mosquito is a carrier of Malaria, Encephalitis, Dengue and Zika virus.

Malaria Eradication: For Africa as America

There is a page in the history books waiting to be written for the eradication of malaria. In recent years, malaria has killed more people globally than war—it’s killed predominately children, and predominately in sub-Saharan Africa. Despite being curable, and eliminated from most developed countries, malaria is the fifth deadliest infectious disease in the world.

A team of scientists in Italy is looking to write that history. Read More

On Social Suicide Prevention, Don’t Let the Perfect be the Enemy of the Good

In a piece in The Guardian and a forthcoming article in the Yale Journal of Law and Technology, Bill of Health contributor Mason Marks recently argued that Facebook’s suicide prediction algorithm is dangerous and ought to be subject to rigorous regulation and transparency requirements. Some of his suggestions (in particular calls for more data and suggestions that are really more about how we treat potentially suicidal people than about how we identify them) are powerful and unobjectionable.

But Marks’s core argument—that unless Facebook’s suicide prediction algorithm is subject to the regulatory regime of medicine and operated on an opt-in basis it is morally problematic—is misguided and alarmist. Read More

Is Narrative Real?

At the end of last semester, I conducted an online survey and series of interviews seeking to understand the perspectives of seniors on questions of dementia and decision-making. In particular, I asked people to consider what things about themselves they wouldn’t want to make decisions without: what kinds of changes to who you are and to mental capabilities, induced by dementia or otherwise, would you want your family to be allowed to step in and prevent you from making?

The answers, perhaps unsurprisingly, showed no real consensus. Some people cared only about their cognitive abilities at the time the decision was being made. Others saw their personality as a determinate set of values without some of which they would consider themselves a different person. Still others were concerned only about the safety of themselves and their loved ones.

If I was looking for any clear answers to what people care about (I was), then that seems to be a fool’s errand.  Read More

What If the President of Nigeria Had Been Cloned?

In a helpful reminder that American politics are not the world’s only ongoing farce, Nigeria’s President Muhammadu Buhari felt compelled last month to deny rumors that he had died and been replaced by a clone. “On the issue of whether I’ve been cloned or not,” he said “I can assure you all that this is the real me.”

Exactly what a clone would say, no?

Although by all accounts there is (obviously) no actual evidence for what would have been a marvel of scientific achievement, what if he had been cloned? What if a sitting head of state of a constitutional democracy were replaced by a clone of himself during his tenure? Would the clone have a legitimate claim to power, or should the affair be treated as some kind of a high tech palace coup? Read More

The Non-Identity Non-Problem

Around this time last year, I wrote a blog post for the Hastings Center, in which, in the context of responding to Professor Vardit Ravitsky’s report on reproductive autonomy and public health, I made the argument that when considering the ethics of selective abortions, we do not always confront a philosophical issue of non-identity because we can, in some cases, consider two genetically distinct embryos the same person.

Nobody buys my argument. Read More

Man pictured from the back, sitting on a roof, looking at a full moon.

Towards Human Bioprogress

Bioethical debates are often something of a dialogue of the deaf. A fundamental reason for this is that so much of bioethical theorizing is just rationalizing intuitions. But part of this problem is that we’re talking about different things. For a long time, bioconservatives have laid claim to a deeper understanding of what life is really about. These new technologies might look exciting to you, they say, but if we adopted them, we would lose the things about our lives that make them valuable, that make them human. Bioprogressives basically ignore these claims. They respond with statistics about how helpful technology X will be. They assume without explaining that life is about something else.

The bioconservatives are right that these questions matter, and it has been a mistake for bioprogressives to neglect them. It’s a mistake because if the bioconservatives are right about the meaning of life then they are right about the policy issues. Engaging on this question at least takes their argument seriously. Perhaps more importantly, it’s a mistake because the bioconservative theory of the meaning of human life is so obviously wrong. Read More

Prosecuting Healthcare Fraud: The Need for Statutory Guidance on Costs and Benefits

The Trump Administration launched the largest healthcare fraud takedown in history in June, charging over 600 individuals responsible for over $2 billion in fraud losses. This takedown, along with the previous summer’s (which had previously been the largest when it happened) has allayed concerns that the Justice Department would ease off healthcare fraud prosecutions as a form of white-collar, rather than violent, crime.

Indeed, former Attorney General Sessions committed to aggressive prosecution of healthcare fraud as part of the Administration’s response to the opioid epidemic. One change does seem clear, however: the Administration is prioritizing the prosecution of individuals, and scaling back on the prosecution of corporations. Read More