عنوان انگلیسی مقاله:
Big Data, precision medicine and private insurance: A delicate balancing act
ترجمه فارسی عنوان مقاله:
داده های بزرگ، پزشکی دقیق و بیمه خصوصی: یک موازنه ظریف
SAGE Publications, Big Data & Society January–June 2019: 1–6
Alessandro Blasimme , Effy Vayena and Ine Van Hoyweghen
In this paper, we discuss how access to health-related data by private insurers, other than affecting the interests of
prospective policy-holders, can also influence their propensity to make personal data available for research purposes.
We take the case of national precision medicine initiatives as an illustrative example of this possible tendency. Precision
medicine pools together unprecedented amounts of genetic as well as phenotypic data. The possibility that private insurers
could claim access to such rapidly accumulating biomedical Big Data or to health-related information derived from it would
discourage people from enrolling in precision medicine studies. Should that be the case, the economic value of personal
data for the insurance industry would end up affecting the public value of data as a scientific resource. In what follows we
articulate three principles – trustworthiness, openness and evidence – to address this problem and tame its potentially
harmful effects on the development of precision medicine and, more generally, on the advancement of medical science.
Keywords: Precision medicine | Big Data | information asymmetry | ethics | insurance | adverse selection