Leaving your corpse to researchers after your death is a relatively simple process, but donating your medical data to science is still almost impossible. There are & # 39; s programs for body donation across the United States, including at major medical schools, and thousands of people participate in the program every year. However, it would be incredibly difficult for those same people to donate the amounts of medical data that they have collected throughout their lives for a research team, although some say they would be interested in this. So when a group of ethicists and lawyers met at the Oxford Internet Institute last year to get a Ethical code for the donation of medical records after death, they built a framework for a trial that does not currently exist.
Until recently, most of the discussion about post-death data has focused on social media platforms and other types of personal data Jon Cornwall, associate professor in the Center for Early Learning in Medicine at the University of Otago in New Zealand. "Almost nobody has thought about what will happen to all the medical records that hang around after people die."
"We have not found any systems where you could actively provide your data," says Jen Krutzinna, a bioethicist, one of the code's authors, and a member of the Digital Ethics Lab at the Oxford Internet Institute. "There is no way to pass it on correctly."
That is despite the value of the information in health records, which could help answer a series of public health questions that need information about human health over a long period – such as how working in a particular industry affects the aging process or how exposure to pollutants affects how we develop. The ethical code on data donation, says Krutzinna, is the first step towards the development of a regulatory system that allows researchers to benefit from the health data that people leave behind.
Millions of posthumous medical records are in digital systems, and that huge volume is only going to grow. A analysis of the Marshfield Clinic health system in Wisconsin, for example, showed that by 2056 his data repository will have more medical data from deceased patients than from living patients.
The ethical code developed by the Oxford group was published in January and was the result of previous work on other types of medical donations, such as organs, organs and eggs. It states that any collection of posthumous health data should be used for the common good and not be exploited commercially, that research with the data should be shared with the public and that it should be carefully stored. People who donate their information should be given as much information as possible about how their data can be used, and they should have the option of restricting the use of their data.
"Even if you're dead and it doesn't matter, you're worried when you sign that form," says Krutzinna. "There is some anecdotal evidence that there are certain types of medical information that people do not want to disclose, such as sexual and mental health."
Concerns about bequests aside, other research has shown that many people are okay with their data that have a life after their death. Cornwall, who focus groups performed with adults in New Zealand, he says that people support the idea of storing and using posthumous medical records. "They want anonymity and privacy, but they also want their offspring to have benefits," he says. Participants in the small study wanted the data to be processed by the government (not private companies), worried about hacking and did not want the data to be sold. The group was divided by the degree of consent: some people wanted to record to donate data, while others were satisfied with an opt-out system.
Although there is still no good way for it give your data after death, existing laws and regulations ensure that researchers can use electronic medical records of people who have died: in the UK, for example, scientists can request permission to open and use anonymized National Health Service (NHS) medical records. With the NHS policy, people can request to abandon that investigation, but it is only institutional policy, not law, notes Edina Harbinja, associate professor of media and privacy law at Aston University in Birmingham, England.
In the United States, HIPAA laws determine that personal health information remains private 50 years after death unless family members or an authorized person disclose it. However, this law also allows scientists to request and consult data from institutions for which it is held research purposes (such as hospitals and insurance companies), as long as identification data is deleted. "It is more permitted than the UK," says Harbinja. "But there are indications that it is being used less often." There are practical barriers in the US: the national health system in the UK means that records are centralized, but in the US, the data is hosted by multiple institutions. "It is a fairly liberal provision, but it is difficult in practical terms," she says.
Overall, these existing frameworks for posthumous data are often inconsistent and are based on institutional policy rather than established legislation. They also do not consider the idea of donation. "I would like to see more details about data donation and the deceased," says Harbinja. "There is room for introducing a consent or consent from family members, as is the case for organ donation."
There is some interest from policy makers in the donation of medical data in the European Union, says Krutzinna. She and her colleagues are participating in a workshop at the European Commission's e-Health Network meeting in June to discuss the problem, she says. It is important in the future to process all possible damage that could result from this data, she says. "What if technology improves enormously? What if the genetic diagnosis became much more accurate? We need to incorporate precautions," she says. It will be particularly important to have clear guidelines for all genetic and genomic data in medical records because they do not only contain information about the deceased; they also contain information about family members who may not have consented to give their information away.
It will also be important to build a diverse data set, says Krutzinna. "How do we ensure that all groups are sufficiently represented, not just white Westerners? We don't want data that can't be used for everyone," she says. "I would like to see more diverse researchers involved at this stage, and ensure that they are represented in ethics discussions."
The ethical code established at Oxford is the first step to a possible future in which data donation is possible. "We know the most important ethical challenges. We know most of the most important legal issues," says Krutzinna. "We then have to think about what we can do in practice and how we can arrange this."
It is important to establish clear systems so that people are aware of their options, and they can make informed, active decisions about what they want to do with their medical records after they die, Harbinja says – whether it destroys or destroys any data point offers for a scientist. "We must be able to choose how we remove our digital self."