Scenario: Personal Health Records

Debora Weber-Wulff

Personal Health Records are all the rage. Do you remember what X-rays you have had or the names of the medicines that you regularly use? What were your blood cholesterol levels last year?

The company Health & More offers a personal online health record that provides a complete and accurate summary of the health and medical history for their customers by gathering data from many sources, including their fitbits, and making this information accessible online to anyone who has the necessary electronic credentials to view the information. In particular, Health & More collects information about

• allergies and adverse drug reactions,
• medications (including dose and how often taken) including over the counter medications and herbal remedies,
• illnesses and hospitalizations,
• surgeries and other procedures,
• vaccinations,
• laboratory test results,
• and family history. (based on the Wikipedia entry PHR)

In order to finance this service, which is offered to customers for a very low price, Health & More sells de-anonymized data to interested parties, both medical researchers, health care providers, and marketers.
Inge had an account with Health & More, and since both her mother and her aunt had died of breast cancer, she religiously had a mammography every year. After her kids were grown up enough to take care of themselves, she applied for and obtained a great new job that offered health benefits.

But the health plan – for no clear reason – refused to offer her coverage for breast cancer, unless she paid a very high additional monthly fee. Inge managed to discover that the health plan provider was also a customer of Health & More. But it was not possible for her to discover the reasons why she was denied coverage

Questions

• Who are the actors in this scenario? There may be unnamed actors, and not all named actors are truly involved in the case.
• What are the ethical problems (not the legal problems) involved in this scenario?
• Should Inge be able to discover why she was denied coverage?
• Is it ethical for Health & More to sell de-anonymized data to others? They would not be able to cover their expenses otherwise.
• What would be an ethical way of regulating access to the data?

Created for a workship for the Master’s Program in Computational Neuroscience, Charité, Berlin in 2010.