News Feature | April 11, 2016

Young Patients Unclear About Informed Consent Relative To Data Sharing

Katie Wike

By Katie Wike, contributing writer

Total Data Market Could Total $115 Billion By 2019

Patients in a recent survey gave varying answers when asked about informed consent for healthcare data research, says BioMed Central.

Sharing medical data is critical for research, but patients are unclear about which types of data require informed consent according to a recent report from BioMed Central. Young patients specifically were often confused about informed consent and what types of data they should be sharing. BioMed Central’s survey focused on patients between the ages of 17 and 19.

Health IT Security notes there were no consistent answers from participants when asked if consent was needed in four different types of scenarios. Participants were also unsure what different types of consent were.

“Despite a range of consent procedures being explained, the young people tended to equate consent with opt-in consent through which participants are given information about a study and specifically ‘asked’ if their data can be used,” the study reports. “This would suggest that providing information, and allowing time for discussion, may be insufficient to change perceptions of what consent ‘really’ means.”

Participants were asked if consent was needed for a study linking teenage pregnancy and socioeconomic status and a study linking mental health illness and crime rate.

The majority of participants found these topics of research to be stigmatizing.

  • A portion felt explicit consent was required because the health information could be used to single out and judge the individuals.
  • Others argued that opt-in consent was required because individuals own the right to their own health information.

The other studies about birth weight and living condition related to risk of heart disease later in life and the risk of asthma in specific areas of a city.

  • Some believed that opt-in consent may be waived because these studies are more important for the public good.
  • Others felt explicit consent was still required, even when it was explained that acquiring opt-in consent for larger research projects is resource intensive.

“For many participants in this qualitative study, the requirement for consent appeared to be based on the individual research proposal and the sensitivity of the personal information involved. This appeared in turn to be related to concerns around the potential for harm from the disclosure of identifiable sensitive information,” concluded the authors. “For some individuals these concerns could apparently be mitigated through anonymization of the data. Others appeared to either not understand, or not believe, that effective anonymization was possible; or expressed a view that, even where personal data were effectively anonymized, consent should be sought for reasons of etiquette and trust, as well as a sense of personal ownership.”