Illustration of a street lined with houses

Genetic Discrimination in Housing and Lending: What’s the Risk?

By Kaitlyn Dowling, based on research by the Cyberlaw Clinic at the Berkman Klein Center for Internet & Society

Illustration of a gavel made out of a DNA helixIn a year-long series on Bill of Health, we’ll be exploring the legal scholarship on genetic non-discrimination. We’ll talk more about GINA and state laws protecting citizens from genetic discrimination. We hope these posts help shed light on this complex and ever-more-relevant area for legal scholars, policymakers, and the public at large. Read the previous posts in the series.

Nondiscrimination in Housing and Lending

Most states regulate the use of genetic information in some way, but protections are typically limited to employment and insurance. To most people, those two areas of protection seem obvious: it’s easy to see why your health insurer would want to know if you’re likely to become expensive to cover. Likewise, you can also understand why potential employers would want to know if they’re about to hire a worker who’s likely to need significant time off to attend to health issues. Only a select number of states ban genetic information discrimination in other contexts, like education, disability insurance, and life insurance.

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Photograph of a doctor in blue scrubs overlaid with an illustration of a padlock

Nudges or Shoves in the Secondary Use of Health Data: What is the More Desirable Approach? (Part 2)

By Marcelo Corrales Compagnucci, Janos Meszaros & Timo Minssen

This post is the second part in a two-part series about nudge theory, health data, and the U.K.’s National Data Opt-out System. You can read the first part here

Governments are always actively trying to improve their health care systems, and the secondary use of health data is one way of reaching this goal effectively. The secondary use of health data involves the use of health care data collected for a new purpose, such as research and policy planning. This data is usually collected from hospitals and health care systems – large databases containing administrative, medical, health care, and personal data from patients.

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ancestry dna kit box

Gamete Donor Anonymity is a Myth: Q&A With Seema Mohapatra

By some accounts, 26 million people have undergone direct-to-consumer (DTC) genetic or ancestry tests. While some of the results of these tests seem might seem obvious (I turned out to be half-Hungarian and half-Ashkenazi, to no one’s surprise), there have been a number of accounts in the media of test results that have been considerably more dramatic.

Some of the more shocking — and now shockingly common — scenarios are the ones in which a consumer finds out through a DTC test that they were donor-conceived, and that one or both of the parents who raised them are not their genetic relatives. Gamete donors, who often provide genetic material (eggs or sperm) with the promise of anonymity, are finding themselves the recipients of messages from genetic children they never intended to meet.

Gamete donors could argue that they have a right to privacy. But Prof. Seema Mohapatra suggests the idea of gamete donor privacy is no longer realistic, due to the state of genetic technology.

I sat down with Prof. Mohapatra to learn more about the many ethical and legal questions DTC genetic testing raises for donors, recipients, and clinics.

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Graphical image of a genetic screen merging with algorithmic code

Do You Own Your Genetic Test Results? What About Your Temperature?

By Jorge L. Contreras

The popular direct-to-consumer genetic testing site AncestryDNA claims that “You always maintain ownership of your data.” But is this true?  And, if so, what does it mean?

For more than a century, US law has held that data – objective information and facts – cannot be owned as property. Nevertheless, in recent years there have been increasing calls to recognize property interests in individual health information. Inspired by high profile data breaches and skullduggery by Facebook and others, as well as ever more frequent stories of academic research misconduct and pharmaceutical industry profiteering, many bioethicists and patient advocates, seeking to bolster personal privacy and autonomy, have argued that property rights should be recognized in health data. In addition, a new crop of would-be data intermediaries (e.g., Nebula Genomics, Genos, Invitae, LunaDNA and Hu.manity.org) has made further calls to propertize health data, presumably to profit from acting as the go-betweens in what has been estimated to be a $60-$100 billion global market in health data. 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

Handcuffs on a pile of pills

Emergency Department Psychiatric Holds: A Form of Medical Incarceration?

Wait times and length of stay in emergency departments are a hot topic and often result in a variety of identifiable harms that include medical error and failures to meet quality care measures. Patients with psychiatric conditions, including suicidal ideations, risk for harm to others, or psychosis, are particularly vulnerable to increased emergency department (ED) lengths of stay. The length of ED holds for psychiatric patients can be three-fold that of similar holds for medical patients. Lack of access to appropriate care, comorbid medical illness, or violent behavior can all contribute to this.

Increased length of stay impacts the efficiency of the ED itself, increasing wait times, utilizing human resources and physical space. It has a more important impact, however, on the patient. Patients may be held in a small room with constant observation for days with little or no access to natural light, bathing facilities or contact with family or friends. They may be dressed in paper gowns, told when to eat, when to sleep and confined to their room for days at a time, emulating the conditions in a maximum security prison. Emergency Departments, through no fault of their own, are becoming holding cells for patients who are both vulnerable and often marginalized.

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ONC’s Proposed Rule is a Breakthrough in Patient Empowerment

By Adrian Gropper

Imagine solving wicked problems of patient matching, consent, and a patient-centered longitudinal health record while also enabling a world of new healthcare services for patients and physicians to use. The long-awaited Notice of Proposed Rulemaking (NPRM) on information blocking from the Office of the National Coordinator for Health Information Technology (ONC) promises nothing less. 

Having data automatically follow the patient is a laudable goal but difficult for reasons of privacy, security, and institutional workflow. The privacy issues are clear if you use surveillance as the mechanism to follow the patient. Do patients know they’re under surveillance? By whom? Is there one surveillance agency or are there dozens in real-world practice? Can a patient choose who does the surveillance and which health encounters, including behavioral health, social relationships, location, and finance are excluded from the surveillance? 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

Graphic of an algorithm overlaid on an image of a city

HIPAA is the Tip of the Iceberg When it Comes to Privacy and Your Medical Data

Big data continues to reshape health. For patient privacy, however, the exponential increase in the amount of data related to patient health raises major ethical and legal challenges.

In a new paper in Nature Medicine, “Privacy in the age of medical big data,” legal and bioethical experts W. Nicholson Price and I. Glenn Cohen examine the ways in which big data challenges the protection (and the way we conceive) of health care privacy. Read More

A row of colored medical records folders

The Troubling Prevalence of Medical Record Errors

With plenty of potential healthcare concerns and complications arising out of medical diagnoses and treatments themselves, errors in medical records present an unfortunate additional opportunity for improper treatment.

A recent article from Kaiser Health News (KHN) discussed several examples of dangerous medical record errors: a hospital pathology report identifying cancer that failed to reach the patient’s neurosurgeon, a patient whose record incorrectly identified her as having an under-active rather than overactive thyroid, potentially subjecting her to harmful medicine, and a patient who discovered pages someone else’s medical records tucked into in her father’s records. In addition to incorrect information, omitting information on medications, allergies, and lab results from a patient’s records can be quite dangerous.

The goal of “one patient, one record” provides a way to “bring patient records and data into one centralized location that all clinicians will be able to access as authorized.” This enables providers to better understand the full picture of a patient’s medical condition. It also minimizes the number of questions, and chances of making errors, that a patient must answer regarding their medical conditions and history when they visit a provider.

Other benefits, such as cost and care coordination, also add to the appeal of centralized records.

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