Numerous health conditions affecting large parts of the population remain under-researched. As a result, hundreds of millions of people continue to suffer from devasting diseases, such as Alzheimer’s dementia or Parkinson’s disease.
The data required for scientific progress actually already exists in the form of electronic medical records, health insurance spending records, diet data, pharmacy records, and other sources. However, most of it is difficult or impossible to obtain. At the same time, some data that exist are currently unavailable to research due to the absence of an adequate framework to streamline the currently onerous access procedures.
Although individuals can volunteer while alive their data to private corporations by accepting terms and conditions to this effect, it is not yet possible to give one’s medical data (whether during life or after death), for research purposes to a public institution. Nor is there any regulatory or ethical framework in place to guide the donation process. This constitutes an unethical failure to utilize data that are of immense value and importance in the quest to improve public health and to promote the common good.
Examples of existing Biobanks where individuals can donate their data include
- UK Biobank – a large-scale biomedical database and research resource, containing in-depth genetic and health information from half a million UK participants.
- Million Veteran Program (MVP) is a national research program to learn how genes, lifestyle, and military exposures affect health and illness. Since launching in 2011, over 825,000 Veteran partners have joined one of the world’s largest programs on genetics and health.
- All of Us Research Program is inviting one million people across the U.S. to help build one of the most diverse health databases in history.
- Patient-Centered Outcomes Research Institute – PCORI funds studies that can help patients and those who care for them make better-informed healthcare choices.
- Individuals should be able to easily share their data with non-profits, businesses, and academic institutions focused on findings solutions to chronic illnesses
- Individuals should be able to share insurance records, diet data, pharmacy records, and food purchase data with the biobank
- All biobanks should have well-documented APIs (Application Programming Interfaces) that non-profits, businesses, and academics can use to extract shared data. This data may then be analyzed and to provide decision support to patients, businesses, and physicians. One example usage would be the Outcome Labels Initiative