# How to prevent abuse of poster's information and misrepresentation



## roze (Mar 20, 2004)

As a long term poster on FF ( 6 years?) and mother of three donor conceived children, I was very concerned last year and earlier this year to find that other FF members were writing articles for medical journals,clearly using the information that posters on the donor conception threads were posting in their dialogue with others as their alleged 'research' , but also more concerningly embellishing the content of these dialogues and effectively filling any 'gaps' in the information with incorrect and indeed fabricated facts which were subsequently misrepresented as fact in a well known scientific journal. I and a few other people were appalled that this could have happened, and not due to a rogue member of the public but by someone within our midst. This caused me personally a great deal of stress when I least needed it.  I literally felt abused by having our conversations on FF treated as a commodity to belittle our position and to score points. A few of us wrote to the publication in question to complain about the situation but they were not interested, despite clearly their own credibility being put under question by their publishing fabricated material. I doubt whether even the Daily Mail would have stooped to such tactics as it was well below even their standards.Its one thing someone outside doing this, but not someone who actively encourages posters to bare their souls and profers to offer advice.

A few of us wrote to FF Management to ask for answers and for measures to prevent such abuse happening again. I have never received any response whatsoever nor was any apology offered up by the offending person.  This has made me unwilling and cagey to post much heartfelt or detailed information on FF and I tend to have more in depth discussions off FF.

I would therefore like to make posters discussing the donor issues area  aware that such things have been going on and to hereby ask of FF site management as to what codes, policies, or procedures have been put in place to prevent this happening again.I really do think people have a right to be protected in this way.

I look forward to a response this time please.

many thanks


roze


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## Anthony Reid (Jan 1, 2002)

Hi Roze,

My guess is this is about your long running battle.

As I have said to you before - FF is a public forum, and as such is open to the public for viewing. We cannot prevent people reading your posts - or indeed taking them and placing them somewhere and publishing them in medical reports. Just like magazines, we cannot prevent people photocopying their articles or referencing them in medical reports.

If someone takes your posts and uses them elsewhere then they have to ask 'you' as the copyright holder of your post before they reprint your threads. 'FF does not hold the rights' to your posts/threads - we republish them for you. If we were a magazine that paid you to write the posts - then we may have limited rights that would enable us to take action. However we do not.

Should you wish to take this further then I would advise seeking help from a copyright lawyer..... just remember win or lose - either way thousands of people could be affected negatively.

At the moment I cannot remember the exact details of what was said - but I assure you we did (and often do) have words with her. I seem to remember that she was warned on another incident just a few months ago.

As for what FF are doing to prevent this kind of thing.

We automatically refuse requests for media to use content on FF. And also refuse universities/research organisations from interfering on here. This is why we have the media/research requests board. If we did not - then journos would be directly contacting people on here and dredging for information. It is our view that the people need to come to the media - not the other way around.

We also removed ourselves from AFPO(the association of fertility patient organisations) and no longer attend their meetings at the HFEA offices, and this was simply because we couldn't face dealing with her any more.

I guess that this isn't the answer that you are after - but its all I can say on the matter. And as always - I am happy to discuss ideas on possible ways forward to improve situations like this.... or indeed anything on the way FF does things.

And just to pre-empt, we do not enforce banning lightly, nor do we agree with censorship (other than for legal/libel reasons).

Tony


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## Noggin (May 13, 2006)

Tony

Thank you for posting such a frank and open answer to Roze's post. We were very upset to see ourselves being misrepresented on another site, and sought redress from that site (to no avail). To be able to read your honest thoughts on this matter is very much appreciated. My wife was extremely distressed over the use of her information elsewhere (especially as the original post that started the incident was our post on epigenetics). Reading your reply has for us brought some closure on this matter.

I know some people have stopped posting on FF because of the incident in question - hopefully they can be encouraged to return in time. I'm sure your reply will go some way to help them feel comfortable in doing so.

Thanks again
Nogs DH


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## roze (Mar 20, 2004)

Likewise, thanks Tony for your response. I know that this is a public website and everyone runs the risk of information being taken away and used for other purposes however the problem came from within the ranks and that is what was upsetting.

I did wonder about having some sort of code for members whereby everyone is required to treat others posts in confidence and with respect, and not to be used as research fodder externally. I think thats all that might be needed? I know that some websites have closed fora but this isn't always desirable and indeed would prevent others from learning from other peoples experiences. 

Many thanks once again,

best wishes,


roze


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