If I volunteer my data, I want the results back–fast. I want to short-circuit the lengthy dissemination of research results currently in place. I don’t just want my data to benefit future generations. I want it to benefit me, as soon as possible.
I want privacy. Explanations that data cannot truly be safeguarded are not good enough.
I want to be able to take action based on what I learn about my genome. I want protections beyond GINA, particularly for life insurance and disability insurance.
I want risk reducing surgeries to be covered by insurance companies in the event of a positive BRCA diagnosis. Right now, they aren’t required to cover it.
I want genetic testing on demand, with second opinions available, and covered by insurance.
I want medical literacy programs, so that patients can fully engage, have truly informed consent, and make good health decisions based on big data. I want doctors to be well educated about genetic issues.
I want far greater recognition of the ways that socioeconomic status effects access to data and healthcare. I want all people to benefit from volunteering data, regardless of socioeconomic status. I don’t want our data making corporations rich while average Americans can’t afford the innovations made from that data.
I want universal healthcare. Economic inequality is the number one public health issue facing Americans right now. There is a very real danger that the masses will volunteer their genomic data but not be able to afford the medical innovations that result from that data. We cannot allow precision medicine to become the healthcare of the rich.
I want genomic data to be shared, not hoarded by corporations as Myriad Genetics has done in the past.
I want to look at the leadership of precision medicine and see more women, more ethnic minorities, more patient advocates. I want women and ethnic minorities to be well represented in the one million volunteer cohort.
I want clear, accessible pathways for patient involvement in shaping precision medicine. I want to be included. I don’t want to be an afterthought. I want to help shape the future of American healthcare.
What do you want?