“Leaving your corpse to researchers after you die is a relatively easy process but, donating your medical records to science is still nearly impossible.” While privacy laws differ in countries, in the United States HIPAA laws stipulate that personal health data remains private for 50 years after death – unless, family members or an authorized representative release it. National governments as well as, local customs impact the governance for posthumous health data. For example, in the United Kingdom, scientists can request permission to access and use anonymized health records from the National Health Service (NHS) without lengthy restrictions.
Regardless of the privacy requirements or the country holding the medical record, value of the information collected on posthumous health data could help answer a range of public health questions that require data from people’s health over a long time period. A comprehensive medical record has the potential to answer questions that can only be captured from data collected over a lifetime or generations. For example,
Does working in a particular industry affect the aging process?
What is the long-term effect to healthcare workers
from chemicals and radiation inherent
in the healthcare environment?
Does exposure to pollutants impact how we
develop or the development of our offspring?
Answers to these and similar questions helps one to decide on a career, select a location to live, decide to have children, and other individual or family decisions that impact one’s quality of life.
Posthumous health data is valuable not only for the individual and the family, but also for the common good of all society. However, posthumous health data brings a myriad of questions for discussion – ethical, legal, cultural and religious. While a regulatory system can answer questions for academia and research, dealing with family members’ emotions and feelings of the deceased is unmeasurable.
"The ethical code around data donation, Jen Krutzinna says, is the first step toward developing a regulatory system that would allow researchers to take advantage of the health data that people leave behind."
Along with opportunities for research to utilize the posthumous data also come the possibility for lawsuits, which can be viewed as a violation of privacy for the deceased. One must consider not only the individual’s rights, but also religious and cultural heritage, as well as, discoveries after death – genetic, racial, ethnicity – discoveries are endless.
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