Why You Must Stop Using the Word, “Privacy” Now

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

Nobody Reads the Terms and Conditions: A Digital Advanced Directive Might Be Our Solution

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

Image of a young woman sitting in her bedroom in workout clothes checking a smart watch health app

Do You Know the Terms and Conditions of Your Health Apps? HIPAA, Privacy and the Growth of Digital Health

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

José Baselga, MD, PhD

Memorial Sloan Kettering Stops Executives From Corporate Engagements: Is it Enough?

After a high profile set of scandals, the prominent cancer research hospital, New York’s Memorial Sloan Kettering made an unprecedented move to limit their executives capacity to engage with private industry while employed with Sloan Kettering. Part of a larger set of reforms, Sloan Kettering now has policies that curb or limit serving on corporate boards while employed at Sloan or from accepting certain forms of compensation such as stock or equity. These reforms were bold statements from a preeminent academic medical center about the need to ensure that financial conflicts aren’t compromising patient care or the work of the institution.

Yet, are these laudable reforms enough? Read More

Social media concept: students sit at a table with social media notification bubbles floating above them.

Is Your Cellphone Destroying Your Morals? Devices, Distraction and the Impossible Ethics of Modern Life

It isn’t that texting and driving is dangerous per se. If we were perfectly capable of doing both flawlessly, this danger would instantly disappear. Yet, we know that the danger of texting and driving exists precisely because of the fragility of our attention. The consequences of distracted driving loom large: According to one source, “Text messaging creates a crash risk 23 times worse than driving while not distracted.”

The reasons for this lay in the recesses of a brain stunningly ill-suited to multitasking. Yet, what is useful about this example is that it highlights with searing severity the moral risks and costs of an increasingly distracted mind.

As multitasking now defines modern life, a hugely important question emerges: What will an increasingly distracted brain mean for ethics? Read More

Reality star Kim Kardashian at the CFDA Awards at the Brooklyn Museum on June 4, 2018.

Can Kim Kardashian Help Bioethics? Celebrity Data Breaches and Software for Moral Reflection

In 2013, Kim Kardashian entered Cedars-Sinai Medical Center in Los Angeles.

During her hospitalization, unauthorized hospital personnel accessed Kardashian’s medical record more than fourteen times. Secret “leaks” of celebrities’ medical information had, unfortunately, become de rigueur. Similar problems befell Prince, Farah Fawcett, and perhaps most notably, Michael Jackson, whose death stoked a swelling media frenzy around his health. While these breaches may seem minor, patient privacy is ethically important, even for the likes of the Kardashians.

Since 2013, however, a strange thing has happened.

Across hospitals both in the U.S. and beyond, snooping staff now encounter something curious. Through software, staff must now “Break the Glass” (BTG) to access the records of patients that are outside their circle of care, and so physicians unassociated with Kim Kardashian’s care of must BTG to access her files.

As part of the BTG process, users are prompted to provide a reason why they want to access a file. Read More

Alternative Approaches to Ethics

On the blog Somatosphere, there has been a recent series on anthropological approaches to ethics and morality. The key intervention of social science approaches to morality (which one also finds in areas such as feminist bioethics) is a focus on how contexts contour the many situations of ethics. From considering how contexts give rise to ethical meaning to questions of how relations and environments contour one’s moral options, a view of “the social provides” needed depth to how we analyze ethics and also the social situations that render a social issue into a necessarily “ethical” one.

I also wanted to point readers of Bill of Health to Somatosphere because it offers a real resource to readers interested in health policy, biotechnology, bioethics and social studies of health, medicine, and illness. Somatosphere is especially focused on topics that lay at the intersection of Science and Technology Studies (STS) and social studies of medicine.

Given the inherently interdisciplinary nature of bioethics and its wide expanse of interests across overlapping themes, it is important to also survey scholarship in other fields that are relevant.

The series I’ve highlighted below is part of a series on anthropological approaches to ethics and morality. In particular, the series offers a Reader’s Guide on the topic for those hoping to find out more about both anthropological and ethnographically-inflected approaches towards (and theorizations of) ethics and morality.

Part of a multi-series “Reader’s Guide,” readers can find a list of seminal texts here.

woman holding an ipad, looking concerned

What are the Ethics of Electronic Consent Forms?

While bioethics has generally understood technologies to be a source of ethical problems, there is relatively little reflection about issues associated with technology’s role in bioethics itself. The move towards electronic consent is one area in technology. While there is substantial research on consent and the consent process the gradual shift towards digital consent forms appears to have arrived without necessary bioethical reflection. What are the ethical implications of this shift?

Yet, there are other more compelling questions that this brings about: Could the digitization of consent forms support even more robust kinds of consent on the part of patients and research subjects? Given what we know about the gaps between the ideals of consent and the reality of consent in clinical and research settings, could electronic supports be used precisely in areas where consent “breaks down?” How might ethical aims be sustained or emboldened via systems?

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Designing an Economic Bioethics

By Mark Robinson and Joseph M. Gabriel

In a previous post, one of us has argued that bioethical deliberation needs to incorporate an analysis of “market forces in health-related decision-making” under what might be called “economic bioethics.”

To a certain extent, of course, bioethicists already do this. Industry-physician relations, for example, attracts substantial attention from the field. Other notable topics include the price of health-care services and technologies (and drugs in particular), patenting biological material, debates about funding controversial types of medical research, and debates about the allocation of resources during times of scarcity.

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illustration of abstract ecnomics

The Need for an Economic Bioethics

As the animations of markets increasingly shape the timbre and character of medicine, scholars studying ethical issues in health and medicine must be increasingly attentive to the role of market forces as they shape modern health care.

For those interested in the social, ethical, and conceptual dimensions of contemporary health and medicine, there has been a sustained focus on a key set of important challenges; how do we ensure adequate access to health for marginalized and global populations? What are the social and ethical implications of emergent technologies? How are issues of consent articulated in the everyday interactions of the clinic? What are our obligations to persons in terms of end-of-life care? These longstanding concerns regarding access, new technologies and the rights of patients comprise the major thrusts and foci of bioethics, health care ethics, and associated areas of inquiry.

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