July 12 is Last Day to Comment on NIH's Planned Genetic Testing Registry

And as I wrote in March when the registry plan was announced, the NIH would be wise to keep it voluntary; a mandatory database would shoulder the fledgling genetic-testing industry with an unbalanced burden of disclosure.

Full-text access for registered users only. Existing users login here.
New to GenomeWeb? Register here quickly for free access.

Ay, but there's the rub!

Ay, but there's the rub! "Would a voluntary registry, assuming it would require the same kinds of data as a mandatory one, preclude a test's quality and availability?"

The assumption that the voluntary database would "require" the same kinds of data may be a bit of a reach at present. That depends on how the rules of the database shape up. Would a test developer have to have data for every field in the dB in order to meet their burden, or could a number of fields be left blank?

Without some clear guidance, it's understandable how a number of organizations are presently skeptical. Checks and balances will need to be in place to ensure the accuracy and completeness of the deposited information, whether voluntary or mandatory, so that the full benefit of such a dB may be realized.