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Are Views on Consent Unclear with Health Data Sharing?

A recent study reveals that young people are uncertain and inconsistent when asked if informed consent is needed for health data sharing research.

By Jacqueline Belliveau

- Health data sharing is key for improving interoperability and medical research, but, according to a recent study by BioMed Central, the need for consent with medical research may be a gray area.

Study reports young people uncertain about consent, health data sharing

BioMed Central interviewed 55 participants between the ages of 17 and 19 years old to discover how young people felt about informed consent in regards to data linkage and anonymization of health information.

The study showed that there were no consistent responses about whether or not consent was needed in four specific scenarios. Furthermore, participants were uncertain about types of consent.

The researchers explain that electronic administrative data is collected for reasons other than research and is stored in several health and social domains.

Health data sharing benefits research methods. It provides an affordable way for researchers to follow-up on study participants. Follow-up information can difficult to obtain by participant self-reporting. Linking data from disparate sources can also provide additional information about health, environment, lifestyle, and other factors.

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“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.”

“Our evidence suggests that even individuals with a long history of involvement in a research project (including repeated exposure to consent procedures) show evidence of uncertainty and inconsistency around these issues.”

The research also discussed insights about health data and anonymization procedures.

The study shows that health data is viewed differently from other types of data, such as social information. Although health information was considered private, it was more acceptable to share health information without explicit consent in a medical context as long as the research was for public good and not commercial success.

Health information was also perceived by some participants as being owned by the individual and not by the entity that was storing the data. Many participants felt strongly about obtaining opt-in consent whenever health information is accessed because of ownership beliefs.

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Also, some participants did not trust anonymization or de-identifying health data and explicit consent was still needed.

“Anonymisation procedures were also explained but this was not always seen as sufficient to eliminate the requirement for consent: there was some evidence of a lack of trust about how data would be used and concerns about the limits of anonymization,” the study explains.

The qualitative study used participants of the Avon Longitudinal Study of Parents and Children (ALSPAC), a birth cohort study. The interviews were part of the Project to Enhance ALSPAC through Record Linkage (PEARL), which was designed to link ALSPAC participant information and routine sources of health and social data.

As previously stated, the study asked the participants if they believed consent was required in four different scenarios.

In two scenarios, participants were asked if consent was needed for a study linking teenage pregnancy and socio-economic status and a study linking mental health illness and crime rate. The majority of participants found these topics of research to be stigmatizing.

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Some respondents felt explicit consent was required because the health information could be used to single out and judge the individuals.

Other participants notably argued that opt-in consent was required because individuals own the right to their own health information.

The other two scenarios were 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 participants believed that opt-in consent may be waived because these studies are more important for the public good. In these situations, the health information was less stigmatizing and participants believed that individuals would be more inclined to share health information.

Other participants felt explicit consent was still required, even when it was explained that acquiring opt-in consent for larger research projects is resource intensive. In particular, respondents believed that information, such as postcode, is identifiable and researchers would need opt-in consent.

As previously reported by, the International Committee of Medical Journal Editors (IMCJE) stated that clinical trial data sharing is a shared responsibility for protecting information. Sharing clinical trial data would reduce costs and redundancy of studies. It would also support further medical research using the same data.

However, the ICMJE emphasizes that data sharing comes with an ethical responsibility for ensuring that health information, especially PHI, is secured and protected. The study urged editors of medical journals to change the requirements for manuscripts to include stricter health data sharing methods.


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