Despite the value of information that can be derived from sharing medical records posthumously, it is still easier to donate a person's body to science than it is to donate his or her personal medical records after death, according to The Verge.
A group of Oxford Internet Institute ethicists and lawyers recently published a proposed ethical code for the donation of medical records after death. They discovered there are no systems in place where individuals could opt to donate their medical data after death, Jen Krutzinna, a bioethicist and one of the code's authors, told the Verge.
Sharing EHRs with researchers after a person dies can help answer various public health questions, such as how exposure to pollutants affects human development or how working in a specific industry impacts the human body's aging process, according to the code authors. To answer these types of questions, researchers need access to people's health data that covers a long period of time.
The authors used previous research on other types of medical donations, such as bodies, organs and eggs, to develop their data donation ethical code. The code recommends that "any collection of posthumous health data should be used for the common good and should not be exploited commercially, that research done with the data should be shared with the public, and that it should be carefully stored," according to the report. The data donation code also requires that any individual who donates their posthumous medical information should receive as much information as possible as to how his or her data may be used, and the person should be allowed to place restrictions on the use of their data.
Data donation code author Jon Cornwall, a lecturer at the University of Otago in New Zealand, said that after conducting focus groups with adults in New Zealand, he found that individuals were in favor of donating posthumous health records. "They want anonymity and privacy but want their descendants to have benefits as well," Mr. Cornwall told the Verge. Study participants said they want the data handled by the government, as opposed to private companies, and did not want data to be sold.
Different countries have different laws surrounding data donation after death, and in the U.S., HIPAA laws require that personal health data remain private for 50 years after death, the report states. Exceptions to the stipulation include if a family member or authorized representative releases the dead individual's information or if scientists request data for research purposes, with any identifying information removed.
To access the full report, click here.