SAMHSA: Review Mental Health Confidentiality at "Healthy Minds"
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Elinore F. McCance-Katz, M.D., Ph.D.
Assistant Secretary for Mental Health and Substance Use
5600 Fishers Lane / Rockville, MD 20857
Alex M. Azar II
Secretary of Health and Human Services
200 Independence Avenue, S.W. / Washington, D.C. 20201
=== SAMHSA: REVIEW MENTAL HEALTH CONFIDENTIALITY AT "HEALTHY MINDS" ===
Dear Madam Assistant Secretary and Mr. Secretary,
We, undersigned in no particular order, are U.S. taxpayers who seek review by the Substance Abuse and Mental Health Services Administration (SAMHSA) or any interested part of Health and Human Services (HHS), of data confidentiality practices, and your regulation thereof, at the "Healthy Minds" studies on mental health of U.S. college students.
The Healthy Minds studies are surveys that collect extremely sensitive personal, psychiatric and medical data; are conducted at colleges and Universities nationwide; and managed from a lead site at the University of Michigan (U-M). HHS has granted to U-M and its participating college sites (Sites) legal protections under the law  that are advertised by Healthy Minds to potential subjects during recruitment of the surveys, in return for U-M and the Sites agreeing to follow confidentiality rules  as required under those same laws.
We have concerns, motivated by accounts in the press , and related directly, but only under condition of anonymity  by takers of the survey, that confidential Healthy Minds data has been misused, and that the unwarranted collection continues of sensitive data by U-M, data not need for the research, that could only be put to further misuse.
As an example, only belatedly revealed in July, 2017, the Massachusetts Institute of Technology (MIT) used its Healthy Minds data for policy decisions amounting to negative consequences for takers of the survey. This is highly disturbing, even more so because awareness of the misuse was delayed by a year in an apparent culture of fear and silence imposed as part of the punitive use of the confidential mental health data. And the lead site U-M, once aware of this misuse, condoned it, neither alerting survey takers to what had happened nor inviting them to withdraw their consent to use their data.
Further, Healthy Minds continue to this day to collect sensitive personal and academic data  without knowledge or permission of prospective survey takers, who may want nothing to do with the survey. It is as if Healthy Minds has learned nothing at all from the misuse at MIT.
We write to make SAMHSA and all interested parts of HHS aware of what appears to be a lax approach to confidentiality by Healthy Minds, one that will inevitably undermine the trust needed to collect legitimately mental health data on young people, a group so often affected by mental health issues.
We request that you proactively review the situation and confirm this sensitive human subject research is being properly regulated per your charters, specifically whether Healthy Minds, U-M and the survey Sites have lived up to the assurances they gave under their half of the bargain to conduct, in the U.S., sensitive research on people under the Public Service Health Act.
Most importantly, we strongly urge you to provide advice for prospective takers of a Healthy Minds survey whether or not doing so will compromise the confidentiality of their personal data, incur risk of its misuse, or otherwise lead to potential harm for participating.
Finally, we make clear that the scope of this request is only to ask you to advise about the general safety of these surveys for their potential participants, and to affirm your proper regulation of them under the law. We specifically do not seek any discipline or redress of the many researchers involved themselves, for the reason that we expect their conduct, however beneficial or harmful, is almost certainly motivated by good intent.
Thank you for your time and consideration.
 Public Health Service Act, 42 U.S.C. 241(d), Section 301(d)
 45 CFR Part 46, sections 46.111(a)(7) and 46.116(a)(5)
 "Healthy Minds Study survey data informed 2016 Senior House decisions", The Tech, MIT, July 27, 2017 at https://tinyurl.com/Tech20170727
 "A Weird Mit Dorm Dies, and a Crisis Blooms at Colleges", Wired, September 10, 2017 at https://tinyurl.com/Wired20170910
 "Senior House students respond: the chancellor’s allegations are unfounded", The Tech, MIT July 26, 2017 at https://tinyurl.com/Tech20170726
 Healthy Minds: Sample File Guide at https://tinyurl.com/HM18StdFile
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