By Kirell Lakhman

LOS ANGELES — The various government agencies considering creating a genetic-testing registry, especially the NIH, should consider this bit of sobering news:

Twelve percent of respondents to a recent AMP survey of NIH's proposed voluntary genetic registry said they "would discontinue offering a test" if such a database becomes mandatory.

The results of the survey, which an AMP official told me was "impromptu," was released today and comes four months after NIH announced its plan to create a voluntarily public Genetic Testing Registry. According to NIH, the database is meant to "enhance transparency" of such tests and, eventually, enable researchers to develop new ones.

As I wrote at the time, NIH would be wise to ensure the registry remains voluntary. A mandatory database would shoulder the fledgling genetic-testing industry — both its private and public sectors — with an unbalanced burden of disclosure.

AMP, wisely, supports a voluntary registry and has been aggressively pushing to ensure that it does not become mandatory, if for different reasons than the one I outlined.

AMP's statement is meant to be a response to NIH's formal request for information about building such a registry.

"With the vast majority of [survey] respondents working in a clinical laboratory setting, AMP is able to inform the NIH on the general reaction to the [proposed registry], including insight to the community's concerns and guidance to ensure the GTR is a valued resource," AMP President Karen Mann said in the statement.

AMP has close to 2,000 members; around 70 responded to the survey, according to Mary Steele Williams, AMP's director of scientific programs.

Williams told me today that "[m]any of the members that we talked to who did not respond to the survey said that they did not either because they are overwhelmed with their clinical work (soon to get worse with the registry) or did not know that it is intended to encompass more tests than those for inherited conditions."

In general, AMP supports the idea of a voluntary registry as a way "to provide a resource for clinicians and the public about what tests are offered, to increase transparency of testing, to provide a resource for health care professionals, to streamline testing, to improve data sharing, and to standardize tests," according to its statement.

But despite its general support, AMP cautioned that a mandatory registry would have unintended consequences, including forcing some if its members to pull certain tests from their menus --- something that would hurt the communities those labs serve.

But make no mistake: Those injuries would be solely on the shoulders of NIH, and not the labs that stop offering the tests.

Still, this doesn't leave a voluntary registry out of the woods. Other results of the AMP survey showed that less than 60 percent of respondents "were willing to provide analytical and clinical validation information" to a voluntary registry, while two-thirds said that such a database "would have a moderate to significant impact" on their labs.

AMP also said "many expressed concerns about how the registry would interface with currently available registries such as GeneTests" and said they "want NIH [to] ensure that any new registry would avoid redundancy and would not overly burden laboratories' limited resources to comply and update information."

Lastly, respondents said they "felt that if the [registry] were not curated for accuracy, then the value of the information would be limited," and cautioned they were "concerned with how competitors, payers and regulators would use the information" in the database --- presumably one reason for AMP's position against a mandatory database.

"We hope the NIH will continue to actively engage the molecular laboratory community as it works to implement a GTR," Mann said in the statement. "That is the only way to ensure that the registry is a useful tool that provides valuable information for all stakeholders."

Got a tip? Click my byline above to send it along or submit it as a comment below. Follow my headlines on Twitter or subscribe to my RSS feed.