Elderly Care in the Age of Machine and Automation

By Aobo Dong

Would you be willing to accept a professional care-giving robot as a replacement to a human companion when your loved ones are far away from you? During last week’s HLS Health Law Workshop, Professor Belinda Bennett provided a great overview on the imminent age of machine and automation and the legal and ethical challenges the new era entails, especially in health care law and bioethics. After discussing three areas of potential health law complications, Professor Bennett argued that the field of health law is undergoing a transition from the “bio” to the “digital” or “auto,” and that instead of playing a catching-up game with rapidly evolving technologies, more focus should be placed on learning from past and existing laws and regulations in order to meet new demands from the “second machine age.” However, I wish to propose a closely-related but alternative paradigm, that is, using the issues raised by new technologies as a vehicle for improving existing laws and reshaping social norms that once made existing laws inadequate or flawed. I will elaborate on my point through the author’s own example of elderly care.

Despite the fact that the author advocates a revisionist approach for thinking about health law and technology, her paradigm is still about laws serving the needs and solving concerns of the tech industry intersected with health care. I wonder whether it would be productive to view the issue from the opposite direction, that is, how could new technologies and the challenges they raise inform us about existing laws (revealing blind spots or providing opportunity to improve unjust/unfair/discriminatory laws). Viewed this way, we could not only strengthen connections between past laws and future technologies, but also be guided by a clearer sense of how future legal reforms and regulations could redress past neglect and meet new challenges. Continue reading

Sharing Data for 21st Century Cures – Two Steps Forward…

By Mary A. Majumder, Christi J. Guerrini, Juli M. Bollinger, Robert Cook-Deegan, and Amy L. McGuire

The 21st Century Cures Act was passed with support from both sides of the aisle (imagine that!) and signed into law by then-President Obama late last year. This ambitious legislation drives action in areas as diverse as drug and device regulation and response to the opioid epidemic. It also tackles the issue of how to make data more broadly available for research use and clinical purposes. In our recently published GIM article, “Sharing data under the 21st Century Cures Act,” we examine the Act’s potential to facilitate data-sharing, in line with a recent position statement of the American College of Medical Genetics and Genomics. We highlight a number of provisions of the Act that either explicitly advance data-sharing or promote policy developments that have the potential to advance it. For example, Section 2014 of the Act authorizes the Director of National Institutes of Health to require award recipients to share data, and Section 4006 requires the Secretary of Health and Human Services to promote policies ensuring that patients have access to their electronic health information and are supported in sharing this information with others.

Just as relevant, the Act takes steps to reduce some major barriers to data sharing. An important feature of the Act, which has not been extensively publicized, is its incorporation of provisions from legislation originally proposed by Senators Elizabeth Warren and Mike Enzi to protect the identifiable, sensitive information of research subjects. Senator Warren, in particular, has been a vocal advocate of data sharing. Arguably, one of the biggest barriers to sharing is public concern about privacy. The relevant provisions address this concern chiefly via Certificates of Confidentiality. Among other things, the Act makes issuance of Certificates automatic for federally-funded research in which identifiable, sensitive information is collected and prohibits disclosure of identifiable, sensitive information by covered researchers, with only a few exceptions such as disclosure for purposes of other research. These protections became effective June 11, 2017. While NIH has signaled its awareness of the Act, it has not yet updated its Certificates of Confidentiality webpage. Continue reading

Technology and The Horrors of Child Pornography

By Michele Goodwin

A recent spate of arrests in New York emphasizes the potentially dangerous connection between technology and sex crimes.  In a landmark police bust, authorities tracked down and arrested more than seventy people in the New York City area who were trading child pornography.  Among those arrested were a rabbi, police chief, nurse, architect, and nanny.  Police infiltrated chat rooms where traffickers made available images of children engaged in sex acts with each other and adults.

What is the role of technology in the arrests and distribution of these images?  While technology helped officers track down child pornography traffickers, the internet also facilitated the trading of those harmful, illegal images of children.  On line chat rooms and other social network spaces provide for the broad-spread, easy distribution of child pornography.

Importantly, the children whose images are trafficked are re-victimized each time their images are shared, bought, and sold.  The frequency at which this can occur is intensified over electronic media, opening a horrific floodgate as demonstrated in the New York arrests where thousands of obscene, pornographic images of children were collected from dozens of confiscated laptops. Clearly, solutions to this problem must necessarily emphasize examining technology’s  unwelcome dark side.