Why paying individual people for their health data is a bad idea - Nature Medicine

. Some of the benefits and harms emerging from data use affect specific individuals or groups of people. But other benefits and harms are systemic, and felt not only by the person from whom the data come but also by a much wider range of people, or even by society as a whole.

Some commercial companies and data rights activists have proposed that citizens should be paid for their data. The idea is simple: whenever a company uses personal data, they should pay the individuals contributing the data. One mechanism for this is a royalty model, in which people get paid whenever their data are used, even if it is reused by the same company.

Paying people for data is problematic, as it would allow the rich to pay for services with money, while people on low incomes pay with data and concomitant loss of privacy. For example, under a pay-for-use regime, a medical imaging company developing software that detects skin cancer would need to pay each patient whose data they use in the process.

Harms at several levels emerge in this scenario . Some people who get paid for their data will become locked into this arrangement by their dependence on this income. Even if the company uses their data for purposes that they do not support, or if they are concerned about possible discrimination, they will have to agree to the terms in order to continue receiving an important source of income.

BPrainsack nikolausf univienna Should any MD (even optometrists), be incentivized to share patient test data without the patient's permission? Is that ethical?

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