Trump administration’s DNA tests raise ethical concerns

With help from Arthur Allen (@arthurallen202) and Darius Tahir (@dariustahir)

TRUMP ADMINISTRATION’S DNA TESTS RAISE ETHICAL CONCERNS: HHS officials say the Trump administration is using DNA testing to reunify migrant families with their children — a move that has raised concerns among legal experts and bioethicists.

HHS secretary Alex Azar told reporters Thursday that the Department is using testing to “confirm parentage quickly and accurately,” our colleague Dan Diamond reports. Officials added that personnel are using “painless and harmless” cheek swabs and only turning to DNA when reviewing a specific family relationship.

Though HHS officials typically use documents like birth certificates to establish the identity of migrants in custody, DNA testing is necessary to meet the “compressed time frame” to reunify families under a court order, officials said.

Arthur Caplan, a bioethics professor at NYU’s Langone Medical Center, says the government should be mindful of risks associated with DNA testing and should promise to destroy samples after they’re used for identification.

“We expect that the great majority of these parents are exactly who they claim to be ... but we have to protect children from people who would prey on them,” said Jonathan White of HHS’ Office of Refugee Resettlement. “These DNA results are being used solely for that purpose and no other.”

As Morning eHealth’s Darius Tahir reported, lawmakers had urged HHS to consider using DNA testing to speed up reunification, and 23andMe co-founder Anne Wojcicki volunteered her company’s services.

... Reunifying separated families using DNA analysis makes for a good soundbite, but HHS’s use of sequencing technology to match detainees with their biological family leaves a lot of ethical questions unanswered, Jennifer Wagner, a Pennsylvania attorney, told Morning eHealth.

From the tech perspective, the government hasn’t mentioned what genetic markers it’s testing for. Some portions of the genome are only well-suited for identifying close relatives; other portions can be used to identify more distant relatives, like aunts and cousins. The government also hasn’t said what databases it’s using to search for missing relatives. Some DNA databases can be easily repurposed for criminal investigations. (ORR says it’s using the samples merely for reunification purposes.)

While the government can legally force detainees to be tested, the ethics of such a policy would obviously be fraught. That’s not to say there are no valid uses of DNA testing, Wagner said, but “We have to demand details be disclosed.”

— Who’s testing?: The government has said a contractor lab is doing the testing. When the idea of using DNA analysis first surfaced in the national conversation, firms like 23andMe, MyHeritage.com, and ThermoFisher Scientific all offered their respective services to do testing. The latter two firms have said their offers haven’t been accepted, and the government hasn’t said who’s doing the testing for them.

— A particular concern: Caplan says genetic counseling should be offered to the migrants, especially since children can’t give their informed consent. And what if a DNA test shows no biological match with a father who is a father in every other way? Paternity surprises occur in about 5 percent of such tests.

APPLE’S EHR PROGRAM PICKS UP STEAM: Several new health networks are signing up for a feature that allows patients to download health records directly to their Apple devices, a signal that providers find the program valuable, Chilmark analyst Brian Eastwood tells Morning eHealth.

Apple debuted a beta version of the feature in January and has been adding more participants incrementally. Eastwood says it’s too early to tell whether the program will meaningfully change the way patients consume their own health data. If providers find that the Apple feature encourages patients to access their patient records more than they would through a standard patient portal, he might consider it successful, he said.

Cleveland Clinic, among the recent adopters, also offers its own health records app, called MyChart. It’s offering the Apple Health app as another conduit for patient data.

Helping patients access their own records “enhances our relationship with our patients,” Peter Rasmussen, medical director of digital health at Cleveland Clinic, said in a news release. Cleveland Clinic’s broader goal is to “to make that access as easy, convenient and useful as possible.”

eHealth Tweets of the day: Sachin H. Jain, MD @sacjai Many patients have uncommon diagnoses ill-addressed by traditional healthcare systems and models. They are subject to repeat tests and evaluations—with no forward movement on the care. New approaches needed to simplify their experience, improve care, and lower costs.

DJ Patil@dpatill We need to create a data set on ticks, diseases, medical records, etc. And we need it fast. Since the White House isn’t going to ask for it, I hope the states will step up and make this happen. Data scientists are waiting to help WIRED Science @WIREDScience

Since 2004, seven new viruses and bugs transmitted through tick bites have emerged in humans in the US trib.al/unPMfZX

IT’S FRIDAY at Morning eHealth where your author is soliciting low-effort gazpacho recipes. News tips and pureed veggies go to [email protected]. Reach the rest of the team at @arthurallen202, @dariustahir,@ravindranize, @POLITICOPro,@Morning_eHealth.

EHR CODING MISTAKE IMPACTS 150,000 PATIENTS: A coding error by TPP — whose SystmOne EHR system is installed in the U.K.’s National Health Service facilities — led to a data breach that impacted 150,000 patients, GovInfo Security reports.

The error led the system to disseminate information from some patients who had opted out of sharing it with outside groups, such as clinical researchers. Nic Fox, director of primary and social care technology at NHS Digital, said in a statement that his team and TPP have “ “worked swiftly to put this right and the problem has been resolved for any future data disseminations.”

…In other NHS news, to mark its 70th birthday, the system plans to debut a new app in December for booking doctors appointments, ordering prescriptions, and making non-emergency calls (h/t to Histalk.)

ICYMI: INTERMOUNTAIN PUTS $12M BEHIND SOCIAL DETERMINANTS OF HEALTH: Intermountain — which also recently signed on to Apple’s app — is devoting $12 million over the next three years to better analyzing social determinants of health. The group recently announced the new collaborative, called the Utah Alliance for the Determinants of Health, which intends to increase access to health care while decreasing costs. The alliance plans to run two demonstration programs in Ogden and St. George, Utah, examining how factors such as housing instability, food insecurity, and interpersonal violence affect health.

IG REPORT FINDS LAPSE IN PDMP AND TOXICOLOGY POLICY AT A VA FACILITY: A facility within the VA Integrated Service Network 20 prescribed controlled substances to a patient who was at high risk for overdosing, a watchdog reportfinds.

The VA Inspector General’s Office concluded that a primary care provider knew that the patient was getting controlled substances from other pharmacies; that they had a history of abusing benzodiazepines, and that they had received several positive urine toxicology screens. All that information was stored in patients’ EHR records, but the facility didn’t have policies recommending how the provider should adjust their prescribing practices based on that data.

MING UP NEXT WEEK: The Senate Veterans Affairs Committee votes on Robert Wilkie’s confirmation as the next VA secretary Tuesday at 10 am...The House Energy and Commerce subcommittee hosts a hearing on improving the 340B drug pricing program Wednesday at 10 am.

WHAT WE’RE CLICKING ON:

— AHIP CEO says drug pricing is his top priority, FierceHealthcare reports

— Pro Publica and the Houston Chronicle investigate a heart surgery gone wrong at St. Luke’s and the Baylor College of Medicine

— A JAMAForum post explores billing and insurance-related costs and how health IT could reduce them

— A Forbes piece examines the relationship between EHRs and physician burnout

— Lucia Savage’s column in HealthAffairs argues for a comprehensive review of regulations surrounding health information, beyond HIPAA

CORRECTION: An earlier version of Morning eHealth indicated that Jennifer Wagner was a medical doctor. She has a doctorate but not an MD.