Sharing Patient Data Without Exploiting Patients

McCoy MS, Joffe S, Emanuel EJ.
JAMA. Published online January 16, 2020.
doi:10.1001/jama.2019.22354

Here is an excerpt:

The Risks of Data Sharing

When health systems share patient data, the primary risk to patients is the exposure of their personal health information, which can result in a range of harms including embarrassment, stigma, and discrimination. Such exposure is most obvious when health systems fail to remove identifying information before sharing data, as is alleged in the lawsuit against Google and the University of Chicago. But even when shared data are fully deidentified in accordance with the requirements of the Health Insurance Portability and Accountability Act reidentification is possible, especially when patient data are linked with other data sets. Indeed, even new data privacy laws such as Europe's General Data Protection Regulation and California's Consumer Privacy Act do not eliminate reidentification risk.

Companies that acquire patient data also accept risk by investing in research and development that may not result in marketable products. This risk is less ethically concerning, however, than that borne by patients. While companies usually can abandon unpromising ventures, patients’ lack of control over data-sharing arrangements makes them vulnerable to exploitation. Patients lack control, first, because they may have no option other than to seek care in a health system that plans to share their data. Second, even if patients are able to authorize sharing of their data, they are rarely given the information and opportunity to ask questions needed to give meaningful informed consent to future uses of their data.

Thus, for the foreseeable future, data sharing will entail ethically concerning risks to patients whose data are shared. But whether these exchanges are exploitative depends on how much benefit patients receive from data sharing.

The info is here.

Practical Tips for Ethical Data Sharing

Michelle N. Meyer
Advances in Methods and Practices in Psychological Science
Volume: 1 issue: 1, page(s): 131-144

Abstract

This Tutorial provides practical dos and don’ts for sharing research data in ways that are effective, ethical, and compliant with the federal Common Rule. I first consider best practices for prospectively incorporating data-sharing plans into research, discussing what to say—and what not to say—in consent forms and institutional review board applications, tools for data de-identification and how to think about the risks of re-identification, and what to consider when selecting a data repository. Turning to data that have already been collected, I discuss the ethical and regulatory issues raised by sharing data when the consent form either was silent about data sharing or explicitly promised participants that the data would not be shared. Finally, I discuss ethical issues in sharing “public” data.

The article is here.

Changing genetic privacy rules may adversely affect research participation

Hayley Peoples
Baylor College of Medicine Blogs
Originally posted May 26, 2017

Do you know your genetic information? Maybe you’ve taken a “23andMe” test because you were curious about your ancestry or health. Maybe it was part of a medical examination. Maybe, like me, you underwent testing and received results as part of a class in college.

Do you ever worry about what could happen if your information landed in the wrong hands?

If you do, you aren’t alone. We’ve previously written about legislation affecting genetic privacy and public resistance to global data sharing, and the dialog about growing genetic privacy concerns only continues.

Wired.com recently ran an interesting piece on the House Health Plan and its approach to pre-existing conditions. While much about how a final, Senate-approved Affordable Care Act repeal and replace plan will address pre-existing conditions is still speculation, it brings up an interesting question – with respect to genetic information, will changing rules about pre-existing conditions have a chilling effect on research participation?

The information is here.

Trusting big health data

Angela Villanueva
Baylor College of Medicine Blogs
Originally posted November 10, 2017

Here is an excerpt:

Potentially exacerbating this mistrust is a sense of loss of privacy and absence of control over information describing us and our habits. Given the extent of current “everyday” data collection and sharing for marketing and other purposes, this lack of trust is not unreasonable.

Health information sharing makes many people uneasy, particularly because of the potential harms such as insurance discrimination or stigmatization. Data breaches like the recent Equifax hack may add to these concerns and affect people’s willingness to share their health data.

But it is critical to encourage members of all groups to participate in big data initiatives focused on health in order for all to benefit from the resulting discoveries. My colleagues and I recently published an article detailing eight guiding principles for successful data sharing; building trust is one of them.

Here is the article.