A newly published report, “Fairness in Precision Medicine,” by Kadija Ferryman, PhD, and Mikaela Pitcan, seeks to better understand how bias could impact biomedical research into precision medicine.
Bias in medicine research exists in datasets and in outcomes, according to a newly published report, “Fairness in Precision Medicine.”
The report, by Kadija Ferryman, PhD, and Mikaela Pitcan, supported by the Robert Wood Johnson Foundation, seeks to better understand how bias could impact biomedical research into precision medicine.
In 2017, Ferryman and Pitcan conducted 21 qualitative interviews, via phone or in person, with biomedical researchers, bioethicists, technologists, and patient advocates. In the semi-structured interviews, the researchers asked respondents to discuss the potential areas where bias could present itself. The respondents told Ferryman and Pitcan that datasets themselves can become unintentionally biased in a variety of contexts:
Moreover, say the authors, bias may influence the outcomes of precision medicine for patients and the healthcare system:
According to Ferryman and Pitcan, although precision medicine has the potential to transform healthcare for the better, there remains work ahead to ensure that structural determinants of health are acknowledged and addressed and to institute policies that will keep data from being used to marginalize vulnerable people.
“Above all,” say the authors, “patients and the public need to be engaged in this endeavor both to guarantee its success and to hold other actors accountable for potential misuses or misunderstandings about when and how their data should be used.”