In a recent New York Times Op-Ed, essayist Charlie Warzer suggests that the problem of privacy in modern life is that it’s too complex.
His diagnosis? “Privacy is Too Big to Understand.” While his piece contains important points, he’s wrong. While it is true that the many ways that our data is shared (and how) boggles the mind, the issue is not that privacy is “complex.”
The problem is the term itself. I believe we should stop using the term, “privacy.” Read More
Housing is a central social determinant of health, and there is extensive evidence of the negative impacts on health from a lack of access to affordable and stable housing. In March 2019, the County Health Rankings & Roadmaps program, (CHR&R) a collaboration between the Robert Wood Johnson Foundation and the University of Wisconsin Population Health Institute, released its 2019 County Health Rankings, this year highlighting the impact that secure and affordable housing has on how well and long people live.
The report discussed how the location of homes—such as proximity to good schools, jobs, grocery stores, and parks—quality of homes—such as the presence of mold or lead—and cost burdens and opportunities to accumulate wealth associated with different housing conditions—such as renting versus homeownership—all influence the health of individuals and communities. Read More
What do a MacArthur Genius award winner, several health law professors at top schools, executive directors of leading health law centers, an associate chief counsel of the FDA, and partners and associates at top health care law firms all have in common? The Petrie-Flom Center Student Fellowship!
The Petrie-Flom Center Student Fellowship is a competitive one-year program designed to support Harvard graduate students interested in pursuing independent scholarly projects related to health law policy, biotechnology, and bioethics. With intensive mentorship from Petrie-Flom Center affiliates, student fellows are expected to produce a piece of publishable scholarship by the end of the academic year, at which point they may choose to be awarded a modest stipend and/or academic credit. Student fellows also blog regularly at Bill of Health, the Center’s blog, where their work receives substantial public exposure. Student fellows will receive training for online scholarly publishing; participate in and organize Center events; and enroll in the Health Law, Policy, Bioethics, and Biotechnology Workshop, which provides the opportunity to interact with leading scholars in the field.
Could Facebook know your menstruation cycle?
In a recent Op-ed Piece, “You Just Clicked Yes. But, Do you Know Terms and Conditions of that Health App?,” I proposed that a mix of factors have given rise to the need to regulate web-based health services and apps. Since most of these applications do not fall under the Health Insurance Portability and Accountability Act (HIPAA), few people actually read through the Terms and Conditions, and also, the explosive growth of web-based health applications, the need for solutions is dire. Read More
The second-biggest outbreak of Ebola in history has been raging for eight months in eastern Congo. Notwithstanding the truly heroic efforts of the Congolese government, international aid agencies, and the Congo’s U.N. Peacekeeping force, it’s getting worse. As of April 16, 833 people have died.
Ebola is now appears to be a preventable disease. A vaccine completed at the tail end of 2014 West African outbreak has been highly effective where used, although experimental evidence is lacking. Read More
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
By Mark Satta and Lacey J. Davidson
In recent years philosophers concerned with epistemic, moral, and political matters have identified many different types of epistemic injustice. Epistemic injustice refers to “forms of unfair treatment that relate to issues of knowledge, understanding, and participation in communicative practices.”
We are particularly concerned with epistemic injustices in the public health context and the consequences such injustices have for those most marginalized within our current society. When powerful entities act badly, individuals and communities justifiably distrust those entities. This distrust then guides individuals and communities in making decisions with respect to these entities, often causing them to avoid the entities in question. We are concerned with cases in which the distrust is harmful to the individual, even when it is justified. We think this circumstance is particularly common and troublesome in the public health context. Read More
As more health care is being provided virtually through apps and web-based services, there is a need to take a closer look at whether users are fully aware of what they are consenting to, as it relates to their health information.
There needs to be a re-evaluation of how health apps obtain consent. At the same time, digital health offers an important opportunity to embolden privacy practices in digital platforms. We ought to use this important opportunity. Read More
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
Interested in learning more about pharmaceutical policy? Curious about the role of the FDA in ensure safe and effective drugs reach the market? Wondering why drug prices are so high in the US? Readers of my prior posts may enjoy learning more about these topics!
Check out a free HarvardX online course, “The FDA and Prescription Drugs: Current Controversies in Context,” put together by Petrie-Flom Center affiliates Dr. Aaron Kesselheim, Dr. Ameet Sarpatwari, Dr. Jonathan Darrow, and many others, that is now open for enrollment. (Disclosure: I did not play any role in the development or making of the course, but I am serving as a teaching assistant/discussion moderator for the course). Read More
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