Now Add ‘Partners’ to What We Call ‘Patients’

There has been a lot of word-smithing lately about what we call patients and the people who care for them. The word police are suggesting patient-customer-consumer-prosumer-client-contact. Now we can add “partner” or “participant” to the list. When it comes to the Precision Medicine Initiative, even the President of the United States thinks he should own his data and be a research partner, not a mere participant or patient.

The Internet of Things, bioinformatics, remote sensing, and big data have forced us to consider who owns all those bits and bytes, what that means, and the commercial and business opportunities they present.

Even high school kids are being challenged to answer questions they will have to face in the future. We have been down this road before with HeLa cells.

Questions:

1. How much of our righteous indignation is a response to the generally impoverished and uneducated condition of Henrietta’s surviving family?

2. Are we projecting our own ideas of “informed consent” and proactive patients on people who lived over 60 years ago? If so, is this fair? If not, why do you think this?

3. At what point should Henrietta’s family have been informed about the “immortal” nature of her cells? Why?

4. Who would have been best suited for the task of informing the family? Explain your answer in detail.

Here's a place to join the discussion.

These are tough questions for professional bioethicists, let alone 10^th-graders and others. But, these questions will need to be answered along with many more:

1. Who “owns” patient/participant information?

2. Does existing intellectual property law address the issues presented, or will it have to be changed? How?

3. Will the Bayh-Dole Act, regulating IP generated at major research universities, have to be amended? How? Will we have to change the rules for Institutional Review Boards and those doing human subjects research?

4. Will patient partnerships and community based innovation networks (COINs) make research, development, and commercialization of innovation easier or harder, given recent experiences with investor crowd funding and the fact that it took 4 years for the SEC to promulgate rules for the JOBS act?

5. What are the cybersecurity and confidentiality issues?

6. Will Precision Medicine work, in whom and under what circumstances?

7. How do we educate and train the next generation of doctors in the medical, ethical, legal and regulatory issues?

8. Who should fill the space between the data and the doctor?

9. What are the problems with the present state of health data science?

10. What are the solutions to the problems with the present state of health data science?

The world is much more complicated place. When I was in 10th grade, I worried about girls, the junior prom and whether I'd make the baseball team, not what someone was going to do with my DNA. I struck out in all three, but, as things progress, with the right rules, patients, or whatever we call them, might be able to help hit genetic science advances out of the park.