Tag: privacy

Bioethics Blogs

A Modest Proposal

FDA should regulate digital games, and potentially other apps, as medical devices.

Why, pray tell?

One doesn’t have to look very hard to find a growing belief (recognition?) that video games are addicting.  CBS has been on the story since at least 2007.  In 2014, “60 minutes” suggested that a violent video game could prompt murder.  Well, they posed it as a question, but to raise it as they did sounds kind of like asking someone, “have you stopped beating your wife?”  And this past April, they did a piece with a former Google employee who suggested that tech companies are designing games, if not apps in general, to draw people into compulsive use.  They revisited the topic, with the same interviewee, in June, using the term “brain hacking.”  Frontline on PBS did a series on the topic in 2010, looking at concerns about internet addiction as well as arguments that some games may hone desirable skills.

Concern about the effect our entertainment media have on us, especially on our kids, is certainly not new.  Remember Tipper Gore, who, among other things, wrote a book about the subject 30 years ago?

The difference comes if our apps and games are not just addictive and self-reinforcing, but if their creators and marketers not only know it but make them that way on purpose.

According to the FDA, a medical device, subject to premarketing and postmarketing regulatory controls by the FDA, is defined in Section 201(h) of the Food, Drug, and Cosmetic Act as (emphasis mine in what follows):

  • “an instrument, apparatus, implement, machine, contrivance, implant, in vitro reagent, or other similar or related article, including a component part, or accessory which is:
    • recognized in the official National Formulary, or the United States Pharmacopoeia, or any supplement to them,
    • intended for use in the diagnosis of disease or other conditions, or in the cure, mitigation, treatment, or prevention of disease, in man or other animals, OR
    • intended to affect the structure or any function of the body of man or other animals, and which does not achieve its primary intended purposes through chemical action within or on the body of man or other animals and which is not dependent upon being metabolized for the achievement of any of its primary intended purposes.”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

How paranoid should I be about my personal health care data privacy?

A recent Wall Street Journal article by Twila Brase suggests that anonymous medical data may not be so anonymous. This piqued my paranoia antenna. Her concern focuses on the new 21st Century Cures Act, which not only significantly increased funding for cancer research and opioid treatment programs, but also created “an ‘information commons’: a government-regulated pool of data accessible to all health researchers, regardless of… // Read More »

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

India Supreme Court Declares Right to Privacy

This week, the Supreme Court of India ruled that privacy is a fundamental right.


While not framed as a right to die case, at least one concurring justice observed: “An individual’s rights to refuse life prolonging medical treatment or terminate his life is another freedom which fall within the zone of the right of privacy.”


The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Lessons from the West African Ebola epidemic

Conventional wisdom—and an article in the Journal of Medical Ethics reviewed on this blog two years ago—advise that health research should not be conducted during times of crisis. Yes, such conditions compromise the controlled environments that studies typically require to produce reliable results, but they can also threaten the ethical integrity of research. Without institutional mechanisms to hold them accountable, investigators may cut corners, violate standards of privacy and informed consent, and even endanger participants. Disruption in the normal function of medical services can also apply pressure on individuals unable to access care by traditional means to seek it out by participating in risky research. And even if one assumes that researchers display honesty beyond reproach, it is still unreasonable to expect that they would be able to keep their cool in the midst of widespread panic and social collapse. But there is a fly in the ointment, at least when it comes to crises caused by epidemics. Public health organizations are first-responders at these moments, but they would be dead in the water without relevant data collected under real-world conditions to guide their actions. In this situation, the precautionary principle alone is not enough to stop a study altogether. In fact, it could be argued that an absolute prohibition against biomedical research in such situations may itself be unethical. The question then becomes, not whether, but how to guarantee ethical research during outbreaks?

The Ethics Review Board (ERB) of Médecins Sans Frontières (MSF) had to contend with this question during the 2014 Ebola epidemic. They recently chronicled their experience in the April issue of Public Health Ethics.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Cyber Security & Implanted Bio-Monitoring Devices

Dylan Roskams Edris describes risks associated with implantable remote bio-monitoring devices.

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Over the past few years, there has been a rapid growth in the development of implantable remote bio-monitoring systems for medical purposes. For example, implantable monitors that allow for constant monitoring of blood glucose and heart status are being tested in clinical trials. A defining feature of implantable monitors for medical care is the ability to transmit the data they collect wirelessly without patient intervention. Suzanne E. Spaulding, former Under Secretary for the U.S. Department of Homeland Security, said that: “It has been predicted that by 2020 the internet will expand to include 50 billion connected devices.”  We can expect that this will include the expansion of bio-monitoring systems.

The appeal of such technology is clear. For chronic conditions like diabetes, the early detection of hypoglycemia can let the patient or healthcare professional take emergency action or notify paramedics before the patient has a potentially fatal seizure. In addition, if a physician or sufficiently sophisticated medical system can access data related to a chronic condition on a remote basis preventive measures can be taken to stop dangerous acute symptoms from occurring in the first place.

However, the uptake of implantable remote bio-monitoring also poses several risks. First, there is a risk that bio-monitoring devices could be illegally hacked or intercepted. If the operation of a device is dependent on the transfer of information between the device and some centralized healthcare system then interference with information going in either direction could affect the device’s function.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

A Start-Up Suggests a Fix to the Health Care Morass

August 16, 2017

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In Congress, a doomed plan to repeal the Affordable Care Act, President Obama’s health care law, has turned into a precarious effort to rescue it. Meanwhile, President Trump is still threatening to mortally wound the law — which he insists, falsely, is collapsing anyway — while his administration is undermining its being carried out.

So it is surprising that across the continent from Washington, investors and technology entrepreneurs in Silicon Valley see the American health care system as the next great market for reform.

Some of their interest is because of advances in technology like smartphones, wearable health devices (like smart watches), artificial intelligence, and genetic testing and sequencing. There is a regulatory angle: The Affordable Care Act added tens of millions of people to the health care market, and the law created several incentives for start-ups to change how health care is provided. The most prominent of these is Oscar, a start-up co-founded by Joshua Kushner (the younger brother of Mr. Trump’s son-in-law, Jared Kushner), which has found ways to mine health care data to create a better health insurance service.

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The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Pediatrician Discusses Ethics of Parents’ Online Posts

August 11, 2017

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Many parents are quick to post photos of their kids on social media or blog about their child’s health. Parents have learned a thing or two from this practice—from foods to entice picky toddlers to favorite remedies for rashes and other common ailments—and often turn to online communities to share their experiences and network with other families.

On one hand, blogging and posting on such sites as Facebook and Twitter raise questions of privacy and other concerns unique to the pediatric population. But posting such information often provides social and emotional support; this is particularly salient for parents of children with complex or critical illness.

“Since we know social support for parents with generally healthy children is important, it actually may be critical for parents of children with complex or life-limiting illness, particularly when a diagnosis requires daily care and monitoring,” said Dr. Silvana Barone, a pediatrician recently transplanted from Montreal who is currently a clinical fellow in pediatric hospice and palliative medicine at Johns Hopkins Hospital and a postdoctoral fellow at Johns Hopkins Berman Institute of Bioethics. She spoke at a recent NIH bioethics group discussion in Bldg. 50.

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The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Scientists Took Over a Computer by Encoding Malware in DNA

August 10, 2017

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DNA is fundamentally a way of storing information. Usually, it encodes instructions for making living things—but it can be conscripted for other purposes. Scientists have used DNA to store books, recordings, GIFs, and even an Amazon gift card. And now, for the first time, researchers from the University of Washington have managed to take over a computer by encoding a malicious program in DNA.

Strands of DNA are made from four building blocks, represented by the letters A, C, G, and T. These letters can be used to represent the 1s and 0s of computer programs. That’s what the Washington team did—they converted a piece of malware into physical DNA strands. When those strands were sequenced, the malware launched and compromised the computer that was analyzing the sequences, allowing the team to take control of it.

“The present-day threat is very small, and people don’t need to lose sleep immediately,” says Tadayoshi Kohno, a computer security expert who led the team. “But we wanted to know what was possible and what the issues are down the line.” The consequences of such attacks will become more severe as sequencing becomes more commonplace. In the early 2000s, it cost around $100 million to sequence a single human genome. Now, you can do it for less than $1,000. The technology is not just cheaper, but also simpler and more portable. There are even pocket-sized sequencers that allow people to analyze DNA in space stations, classrooms, and jungle camps.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

DNA Testing Data Is Disturbingly Vulnerable to Hackers

August 10, 2017

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In a new study that will be presented next week at the 26th USENIX Security Symposium in Vancouver, University of Washington researchers analyzed the security practices of common, open-source DNA processing programs and found that they were, in general, lacking. That means all that super-sensitive information those programs are processing is potentially vulnerable to hackers. If you think social security fraud is bad, imagine someone hacking your genetic code.

“You can imagine someone altering the DNA at a crime scene, or making it unreadable. Or an attacker stealing data or modifying it in a certain way to make it seem like someone has a disease someone doesn’t actually have,” Peter Ney, a co-author of the peer-reviewed study and Ph.D. student at the school’s Computer Security and Privacy Research Lab, told Gizmodo.

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Image: Wikimedia Commons

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The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Neuroethics Blog Series on Black Mirror: The Entire History of You

By Somnath Das
Somnath Das recently graduated from Emory University where he majored in Neuroscience and Chemistry. He will be attending medical school at Thomas Jefferson University starting in the Fall of 2017. The son of two Indian immigrants, he developed an interest in healthcare after observing how his extended family sought help from India’s healthcare system to seek relief from chronic illnesses. Somnath’s interest in medicine currently focuses on understanding the social construction of health and healthcare delivery. Studying Neuroethics has allowed him to combine his love for neuroscience, his interest in medicine, and his wish to help others into a multidisciplinary, rewarding practice of scholarship which to this day enriches how he views both developing neurotechnologies and the world around him. 
Humans in the 21st century have an intimate relationship with technology. Much of our lives are spent being informed and entertained by screens. Technological advancements in science and medicine have helped and healed in ways we previously couldn’t dream of. But what unanticipated consequences may be lurking behind our rapid expansion into new technological territory? This question is continually being explored in the British sci-fi TV series Black Mirror, which provides a glimpse into the not-so-distant future and warns us to be mindful of how we treat our technology and how it can affect us in return. This piece is part of a series of posts that will discuss ethical issues surrounding neuro-technologies featured in the show and will compare how similar technologies are impacting us in the real world. 

*SPOILER ALERT* – The following contains plot spoilers for the Netflix television series Black Mirror.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.