Use of Patient Genetic Data Raises Ethical Concerns

Providers need to consider the ethical implications for patient care when using genetic data for analytics.

Healthcare organizations expect to face a number of data-related challenges in performing analytics over the next three years, according to respondents in the 2017 HealthLeaders Media Analytics in Healthcare Survey. The top three challenges are integrating internal clinical and financial data (47%), establishing/improving EHR interoperability (43%), and integrating external clinical and financial data (43%). In each case, the data comes from multiple sources and is not easily collated, which is likely why it is a challenge for providers.

Although the response for ethical concerns regarding the use of patient genetic data (8%) receives a low response in the survey, it is also true that the provider usage rate of patient genetic data for analytics is currently quite small. For example, only 9% of respondents say that they draw on patient genetic data when conducting patient-related data analytics. As such use becomes more widespread, concern about ethical issues may also grow.

Steve Hess is chief information officer at UCHealth, an integrated health system serving the Colorado area that includes seven hospitals, 1,620 hospital beds, and more than 17,000 employees. He says that the use of patient genetic data has many ethical implications for patient care, and that it is an issue currently being studied at UCHealth.

"Using patient genetic data adds a bunch of ethical implications. As an example: what if we sequence your DNA data and you are a patient of ours but we haven't seen you in two months, and we notice that based upon your DNA sequencing, the medication that we prescribed for you two months ago probably could have been a better choice? Or there's another non-pharmaceutical therapy that might be better for you? What are our obligations for reaching back out to you?" Hess says.

"It might be that we find something based upon DNA sequencing that wasn't available to us a year ago when we treated you, which is now available to us," he says. "And what if we find something in your DNA that is game-changing; what do we do about that? And do people really want to know some of those things? Do they really want to know what their DNA is showing in terms of being predisposed to cancer, diabetes, or some other disease?"