Your personal health: Frameworks for access to samples and information

May 23, 2008

As we move towards a world of personalized medicine, a key requirement for furthering research and discovery will be access to samples and patients. Sources of the kind of information we need will come from studies like the famous Framingham heart study, various projects sponsored by the Wellcome Trust, and increasingly, long term biorepositories, or Biobanks. The challenge here becomes access to the data, while maintaining privacy and appropriate license and information transfers.

Via the Science Commons blog, I learned about efforts at the Coriell Insititute to provide what they are calling research in a box. The goal is to create an eCommerce sample site that allows researchers to acquire samples and information easily, within a framework designed for the transfer of such information. Science Commons materials transfer license, also used by iBridge Network, plays a role in making the technology transfer as seamless as possible.

In the future, organizations like 23andme, personalized health records, etc can also be sources of information for research. The question is if we can develop frameworks which protect patient privacy, are able to address informed consent and make the data available to researchers and clinical trials (including commercial entities). The ability to develop these frameworks will require dialog between patients, healthcare providers, academia and industry, and transparency in the processes and frameworks. My hope is that Science Commons can continue to play a role here in bringing all these entities together to enable the future of medicine.

I’d like to point out that the scenario being painted above is somewhat simplistic. With the number of stakeholders, potential downstream revenue sharing issues, etc, a lot of dialog will be required, but we need leadership and that’s what I am alluding to.

Image via Wikipedia

Technorati Tags: Science Commons, Biobanking, Materials Transfer, Personalized Medicine, Coriell Institute