Stung by my piece on Time.com What Ricki Lake Doesn’t Tell You About Homebirth, MANA has responded.
The response is the typical disingenuous attempt of MANA executives to justify withholding their death rates … with a twist.
The latest tactic? Changing their Handbook for Researchers just this month removing specific requirements and implying that they never existed at all.
The executives at MANA wrote:
“Our dataset is currently available to researchers, and we welcome applications. There is no stipulation that data must be used for the advancement of midwifery nor is there an agreement promising not to release death rates; this statement is completely false.”
Let’s analyze.
First, the executives of MANA would like to leave the impression that statistics can only be released in the context of research. That is completely untrue. Every state and the US government releases annual statistics on the number of births and the number of neonatal deaths (not to mention a myriad of other health issues). This information is publicly available to anyone for free through the CDC. MANA can and ethically should release its data to the public for free in the same form as the CDC data. There is nothing preventing them from doing this beside their unwillingness to reveal the numbers.
Second, MANA has removed key sections of the Handbook just this month to comport with their current claims.
As it happens, I originally submitted the piece to Time.com in late September. The following quotes are taken directly from the edition of the Handbook prior to this month’s changes. (Through the miracle of the “Way Back Machine,” you can access the edition of the Handbook as it appeared on July 2011 here.) Strike-throughs indicate the relevant text that was removed just this month.
1. A pledge to use the data to benefit the midwifery community:
“The MANA DOR [Director of Research] is responsible for representing the midwifery community in its relationship with investigators… Therefore the MANA DOR expects all investigators interested in collaboration with this community to consider how they can cooperate with these principles, and to describe how they intend to do so in their request for data access.“
The Handbook does still mention that MANA endorses (a very indiosyncratice view of ) the principles of Community-Based Participatory Research. They apparently believe that it is designed to protect homebirth midwives, even though it is really designed to protect research subjects.
2. An elaborate vetting procedure, including, among other things:
“…
a. Investigator affiliations
b. The nature and purpose of the proposed research, including:
i. Basic description of the study design and methods of analysis
ii. Time frame
iii. Specifics of data requested (year, intended site of birth, provider)
…
3) Signed statement of familiarity with Community Based Participatory Research (descriptive material contained in this Handbook) – form available at
http://www.mana.org
4) Signed statement of familiarity with the Midwifery Model of Care, scope of
practice and out-of-hospital birth protocols or practice guidelines (descriptive
material contained in this Handbook) – form available at http://www.mana.org
5) Copy of Research Protocol, to include the following:
a. Description of Project and Research Questions
b. Project Background, Review of the relevant literature, and Significance
c. Methods and Procedures
d. Variables Requested for Analysis, including any time or geographic limits
e. Risks/Benefits Assessment
…”
3. A non disclosure agreement promising not to reveal any data (including death rates) to anyone:
“access will be predicated on the signing of … a Confidentiality and Non-Disclosure Agreement“
replaced with: “A standard confidentiality/ non-disclosure agreement will be provided.”
4. The substantial fee for access remains unchanged:
“Fee for individual researchers is $250 and for institutions $1000.”
So what are we to make of this?
MANA is still struggling mightily to avoid releasing their own death rates. Nonetheless, they have been deeply stung by my accusations, so much so that they went to the effort to remove various offending passages. But they went a bit too far by implying that those passages never existed instead of acknowledging that they removed them.
It’s one thing to call for a retraction of false claims. It’s another thing entirely to amend a document to make it look like the original claims are false.
MANA took a golden opportunity to do the right thing and turned it into another example of mendacity. Instead of announcing that the inappropriate requirements for access to the data were removed, MANA executives have tried to make it look like they never existed. In my judgment, this is grossly unethical conduct and raises questions about whether we can ever believe MANA claims and statements.
And the original issue still remains:
MANA needs to tell us: how many of those 24,000 babies delivered by MANA members died?
There is no plausible reason why this information should be withheld from American women.
