Wouldn’t You Like to Pick and Choose How Your Health Data is Used?

by Carol Selvey

This week, my sister greeted me with a hand-written medical history our mother wrote when she entered a clinical trial for melanoma in 2005. It was the only record we had. She fought valiantly, but melanoma took our mother’s life in 2007, following participation in a clinical trial. By the time she was considered for the trial, she had little concern about her own privacy rights. My father had also readily shared his medical history. When he enlisted in the Marines, he admitted to having high blood pressure and a slipped disk in his spine, but they thought he was faking it so they accepted him; he was honorably discharged a few months later when he suffered temporary paralysis in basic training. After a life-long battle with hypertension, he succumbed to a heart attack at 42.

While not true “genetic” information, I have always freely shared my family medical history, even though it suggests that I may be genetically predisposed to cancer or cardiovascular disease. I never dreamed such information might impact my ability to receive medical benefits, but there is considerable concern about patient privacy and how sharing confidential medical history data may put consumers at risk.

In October, the Office for Civil Rights (OCR) proposed a rule that expanded the privacy and confidentiality protections in the Genetic Information Nondiscrimination Act (GINA).  GINA was originally enacted in May 2008, to promote non-discrimination in healthcare coverage and employment and defines genetic information as protected under the HIPAA Privacy Rule. It prohibits the use of genetic information in underwriting, determining benefits or eligibility, calculating premiums or contribution amounts, or imposing pre-existing condition exclusions. Despite its good intentions, the Disease Management Association of America:  The Care Continuum Alliance has protested that the rule impedes the ability of health plans to implement wellness and chronic disease management programs.

There must be a better way to protect our privacy rights while furthering the advancement of medicine. Our data cannot simply be locked away somewhere privately if it is going to be useful in developing clinical protocols and advancing evidence based medicine. Just recently we learned Kareem Abdul-Jabbar has a rare form of leukemia. USA Today reported that “Normally private, he said he had no qualms about taking his health issue public.” Abdul-Jabbar said “Early detection and treatment really are the keys for anyone who has to deal with this condition…I wanted to educate people about how modern medicine works.” You can even look for his updates on Twitter at http://twitter.com/kaj33 and Facebook at http://bit.ly/1nmPTn.

Like my mother, Abdul-Jabbar is ready to share his experiences with others to help educate and hopefully ease some of the anxiety about the disease. So wouldn’t it be nice to have the ability to share what personal medical information you want, when you want and with whom? That would mean that you could participate in a clinical trial, continue to learn about new ways to treat your condition and further medical knowledge about it, but not make it known to the general public. Such privacy controls have been made possible by Private Access (https://www.privateaccess.info/), an advanced technology company that offers a consumer-centric platform allowing individuals to selectively provide access to confidential and sensitive personal information. It gives the consumer the ability to “control who can, and cannot, see all or selected parts of his or her personal information.” So while the debate over GINA continues, Patient Access makes it possible for patients to decide what information will and will not be shared and when.