Would you allow a government – academic collaboration to collect and analyze both your genetic data and other medical markers of health? This big-data driven mass collection of health information is called biobanking and the little country of Estonia in Europe has embraced it on a large scale. As a listened to a genomics podcast by Illumina called, Illumina Genomics on iTunes, I considered the pros and cons of such an endeavor in America.
In Estonia, with a little over 1 million citizens, only 1 medical school, only 2 major medical centers, and an impressive digital infrastructure, the logistics are simpler than they would be in the United States. The population and its leaders have also reportedly embraced the concept of biobanking in order to advance medical research, especially genetic/genomic research. The leaders support the project and the population trusts their leaders with their health information. Participation is voluntary and includes multiple guarantees that the data will be kept safe and not used against them in any way. Finally, the relatively homogenous genetic background of the people themselves make the data very useful.
In contrast, America is many times more populous, has countless medical schools and countless medical centers spread across a more expansive nation. While I believe our nations history of innovation and ingenuity could use digital technology to overcome the immense scope of such a project here, I see greater barriers. With a history of both government and academic abuses/deceptions towards different groups during medical research, there will be “doubts”. With regular news reports of “security breaches”, many will hesitate. While paper forms may “guarantee” that their health data will not be used to discriminate against them, fewer will feel “safe” in a climate of distrust.
In a society where national, academic, and industrial scandals fill the nightly news, the potential medical advances of such an American genomics project will likely remain unfilled. Another consequence of a fallen world where loss of integrity leads to loss of trust in our institutions and leaders. I, for one would not consent to participation in such a project even though my great love and appreciation of genomics knows what great discoveries might be gleaned from the work. Until a system is developed to assure data security and allay fears, we will likely miss out on discoveries that would otherwise lead to healthier more abundant lives.
Illumina Genomics podcast website: