Mining Patient Emergency Contact Data for Medical Research Raises Ethical Questions

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Although the study has gathered valuable data, it is likely in the medical field's best interest to provide more specific consent forms or gauge public interest in such studies.
Although the study has gathered valuable data, it is likely in the medical field's best interest to provide more specific consent forms or gauge public interest in such studies.

Emergency contacts are an important way to get in touch with next-of-kin when the unthinkable happens. Now, being someone's emergency contact may mean even more as researchers use this information to study the heritability of various conditions.

A recent study published in Cell compiled emergency contact data from 3 academic medical centers, identifying 7.4 million familial relationships.1 The researchers validated the relationships using both clinical and genetic data.

The data allowed the researchers to compute heritability estimates for 500 disease phenotypes, including sinus infections, tooth decay, irregular menstruation, and thyroid disorders, which they found to be relatively consistent with published data.

The results of the study may help advance research into various diseases and responses to medications, without the need for genetic testing.

Although these results may mean great strides for medicine, not everyone is on board.

Craig Klugman, PhD, from the Department of Health Sciences at DePaul University College of Science and Health in Chicago, Illinois, thinks the study is a violation of privacy. In a response to the study, he wrote, "Patients have an expectation that their medical information will be used for their benefit, not for a research project that puts their privacy at risk. Signing a consent for treatment should not include giving a right to my entire medical file and biology for any use, forever."2

Even if a major breakthrough that could benefits these patients comes as the result of this study, the patients whose medical records were used would not be notified. The privacy agreement does not allow for the researchers to contact the physicians or patients involved.

Although the study has gathered valuable data, it is likely in the medical field's best interest to provide more specific consent forms or gauge public interest in such studies.

References

  1. Polubriaginof FCG, Vanguri R, Quinnies K, et al. Disease heritability inferred from familial relationships reported in medical records. [published online May 17, 2018]. Cell. doi: 10.1016/j.cell.2018.04.032
  2. Klugman C. Big data studies and abuse of fiduciary duties. Bioethics.net. Published May 17, 2018. Accessed June 20, 2018.
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