CDT’s report, Placing Equity at the Center of Health Care & Technology, identifies and suggests ways in which privacy protections around consumer health information can benefit everyone, including underrepresented and overlooked communities harmed by current health data practices. Modern consumer health technologies can collect and store troves of individualized health information. Data that may seem irrelevant to our health can be analyzed, combined with other data, and used in ways that are probative and revealing of health conditions.
Consumer-facing health technologies can help and empower people, health care providers, and governments to achieve better health outcomes. However, the current regulatory regime fails to adequately address privacy harms and discriminatory uses of health data, particularly given the prevalence of data exchange between variously regulated entities.
Uneven regulatory environments can cause inequities. Unregulated or inappropriate data use can produce biased data, compound historical discrimination, and yield incorrect assumptions that, all too often, disproportionately affect historically marginalized groups, including people of color, immigrants, Indigenous communities, women, disabled people, and LGBTQ+ communities.
The burden to protect health data properly belongs with the entities collecting and using the data, rather than with individuals who are already burdened by their health issues. Our report identifies reforms designed to curtail data practices whose associated harms can be especially acute for underrepresented and overlooked communities. When appropriately protected, data generated by our devices and other technologies has the potential to help us all be healthier and address a history of inequities, including inequities in the provision of health care. However, for these critical, life-changing benefits to be realized, we must change certain consumer health data practices and root those protections in fair and equitable principles.