A breach of privacy

10 Oct

Privacy is an important point for all of us. I blogged for a long time under a pseudonym in order to protect my child’s privacy. The subject is important enough to me that when I noticed what I considered to be a breach of privacy by Andrew Wakefield and his “Dr Wakefield Justice Fund”, I wrote to them with the information in order to give them the chance to correct this. To explain: the “Dr. Wakefield Justice Fund” posted documents from Mr. Wakefield’s defamation suit filed against Brian Deer and Fiona Godlee. One of those documents includes the full names and birthdates of seven of the patients seen at the Royal Free Hospital in the 1990’s.

I sent the following email to one of the contact email addresses for the “Dr Wakefield Justice Fund” (info@drwakefieldjusticefund.org).

Hello,

if you aren’t already aware of this, you may want to know that in this document:

[link redacted by me for this article]

You have made public the full names and birth dates of seven patients seen at the Royal Free. Given the complaints levied against Mr. Deer for, as I recall, publishing the first names of the Lancet 12, I thought you might want to take the effort to redact that document.

Matt Carey

I sent this Friday of last week and so far have received no response and no correction has been made. I have not made an effort to find and remember the names of the “Lancet 12″ so these names are unfamiliar to me (with the exception of two last names). I did a quick internet search on some of the names and did not find them linked to Mr. Wakefield or MMR in a relatively brief search, so this seems like a true breach of privacy. I’ll note that in the GMC hearings names were occasionally spoken but the court kept to a standard of anonymizing child and parent names in the transcript.

I would encourage the “Dr. Wakefield Justice Fund” to redact that and any other documents which contain such information.


By Matt Carey

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14 Responses to “A breach of privacy”

  1. Science Mom October 10, 2012 at 21:18 #

    I’m not shocked that they have a double-standard for their actions. You are very compassionate for bringing this to their attention. I only hope they will heed your request.

  2. Gae Marie October 11, 2012 at 03:35 #

    I feel this should have been brought to the attention of the state, and most certainly at this point. HIPPA is a very big deal and taken entirely too lightly by the medical community and this physician having a significantly increases the level of both responsibility and magnitude of potential harm. Please, don’t wait… This should be reported to the proper authorities.

    • Chris October 11, 2012 at 06:02 #

      Which particular state? Since eleven of the children are in the UK, I don’t think an American law like HIPAA applies to them.

  3. Gae Marie October 11, 2012 at 03:37 #

    I meant…this physician having a following significantly increases…. I’ve worked in medical a long time… responsibility to patients must come first.

  4. Broken Link October 11, 2012 at 12:48 #

    Maybe one could write to Wakefield at his personal email address, and ask that he intervene to remove that content. His email, which is also included in these documents is wakersaj@live.com

    I think the authorities should be contacted, but who are those authorities? The children (now young adults) are British, Wakefield is in the USA.

  5. Lawrence October 11, 2012 at 13:56 #

    @Broken Link – I’m not sure at this point, which rules (the UK/EU privacy laws or HIPPA) actually come into play here, if at all.

  6. Shorty October 11, 2012 at 14:12 #

    Broken Link: I’m afraid your suggestion is unlikely to help. Wakefield himself gave the children’s names to a reporter at the New York Times a year or so back. He is very much the architect of this kind of activity.

    • Broken Link October 11, 2012 at 15:27 #

      Shorty, that is amazing to me. Yet, his supporters scream about Brian Deer having access to the names, even though IIRC, Brian never has disclosed them.

      • Lawrence October 11, 2012 at 16:31 #

        They’ll never admit to it & certainly never complain. AW is god in their eyes – sickening really.

  7. Science Mom October 11, 2012 at 17:13 #

    @ Lawrence, sadly I think you are right but the children are entitled to their privacy. I know I know how these parents vomit every last detail about their children publically but it isn’t right. None of these people have any right to take away their children’s rights.

  8. Gae Marie October 11, 2012 at 22:59 #

    I am not too famliar with this physician. If American, or operating in America, I would be inclined to see which country it was published in originally…. If US, he is most likely bound by HIPPA regulations. Although I do recognize it is daunting work for someone not directly involved or obliged to do so…. The inappropriate distribution of PHI, especially as blatant and disregarding as this, is shameful.

  9. Science Mom October 11, 2012 at 23:56 #

    Gae Marie, the physician in question is from the UK but now resides in the U.S. He never had a license to practise in the U.S. and has been stricken from the UK’s GMC (analogous to the U.S.’s AMA). In other words, had his license to practise medicine revoked. He is still bound by the Data Protection Act however but I doubt the act has the teeth to pursue him and he could probably care less anyway.

  10. lilady October 12, 2012 at 06:37 #

    Then too, is the question of how many of the parents/other family members of the children in the *study*, have spoken out on behalf of Wakefield and his *study*, thereby exposing their children to notoriety.

    I’ve tangled with a few of these parents/other family members who post comments on science blogs and other internet websites.

    Why they still defend Wakefield is anyone’s guess. IMO, many of them were in on the scheme to get monetary awards for their children’s “MMR vaccine-induced autistic enterocolitis”.

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