Research on SRE (Sex and Relationships education)

Its not just a problem on these fora: my local AS support group forwarded on a request for research participants from an undergraduate.

I agreed to help but quickly found that the student, despite protestations of having a deep interest in AS people, knew nothing about our needs. Times, places and the duration and nature of the research were not made clear - things sure to cause stress to a person on the spectrum. I withdrew my offer to be involved.

How to make people understand that we are not just research fodder and deserve respect?

Hotel california  - we looked into this. We investigated the possibility of having everyone's first post needing to be approved by a moderator first. However as this system doesn't exist, it would be very expensive to build, and very time intensive to manage.

I'm in the process of recruiting more volunteers, which should help cut down on the amount of time these posts stay up. 

We do have "Your help wanted" section that we're going to switch back on - unfortunately I thought it was live already but it isn't. If a mod hasn't posted about it or on it - best avoid it.  

It's an interesting idea to report back to the universities - I'm going to speak to a few other community managers and see if anyone's already doing this, and if we can set up a way of doing it collectively. 

I agree with Hotel california. We need a clearer means of distinguishing research that has had permission.

Could there be a discussion section that is exclusively approved research requests. Then we would know any others are not approved.

It is important that people on here don't impart confidences to what are undergraduate third year projects for the most part, and are not likely to benefit understanding of autism, as they are simply assessed coursework.

This is particularly important where information about children or vulnerable adults may be disclosed.

Also I wish there is a way by which NAS could report such infringements to the universities concerned. It isn't allowed for undergraduates to do this, and it is lax research supervision that enables it to happen.

I do wonder sometimes if a group of students with similar dissertation topics watches here as guests, as one of their number registers and puts in a request to see what they get away with, and if they slip though they might do it as well.

If universities were notified this was happening, via the Vice Chancellor's office or the Dean of Faculty coveing Health Sciences or Psychology, the word would get back to teaching staff to be stricter about dissertation data gathering.

Students in the current course fees climate are much more savvy and much less scared of authority, whereas academic staff are under pressure to treat students as paying customers, and not discourage enterprise.

But that leaves sites like this very vulnerable to abuse.

Is there a way that NAS can block these research postings before they become live on this forum.

I have noticed that the postings can be seen for several hours before action is taken, and in this time unknowing members could have responded, believing it is being sanctioned by nas.

Also all research students should know that research undertaken in this way has too many confounding variables which will affect the studies reliability and validity. 

What is most bizarre is that this is the University of Southampton, one of the top 15 research universities in the UK - psychology described in the last Research Assessment Exercise as "internationally excellent" This request should be really bad publicity for the University of Southampton because they are a forefront research university, and this sends the wrong messages. 

But again, its a health science suject area... and health sciences can break the rules... apparently. This despite the formation of HEAL www.southampton.ac.uk/heal it stands for Health ethics and the Law. Does make you wonder how effective that is, when they don't manage student undergraduate research properly.....

And then there's the module "Doing Research in Healthcare: research project" HMPR3001. Nothing about ethics in it.

Undergraduate students shouldn't be trawling support discusion groups like this. But when one of the best universities in the country does it, you are left thinking....is this what we've fallen to?  I'm shocked.

Dear Bianca,

As has been mentioned above, before any requests for research are published on this forum you must have approval from the NAS. Please see the link below for information on how to obtain this approval thourgh the proper channels. This is to protect our community members which, I'm sure you will agree, is extremely important.

In the meantime, I have removed your email address from the original post above (we also have a rule against the sharing of personal details, for reasons of confidentiality), please do not repost again until you have been granted approval.

http://www.autism.org.uk/about-autism/research/requests-for-research-and-participation.aspx

Adél, NAS moderator

We keep getting these posts from undergraduates about research projects. None of them seem to have read the community rules, or to understand the importance of getting appropriate permission when recruiting subjects for a research project (not just NAS permission to post here, but informed consent from subjects who may not realise what importance, or lack thereof, the research project they are participating in has).

More importantly there seems to be a big failing in Universities in their teaching. I have several degrees in this field and one thing we were taught was that you had to make sure your subject base was valid for your research.

How are these undergraduates going to know if someone has an autistic spectrum condition or is just saying they do. If the researcher has not validated their subject base their research is void. The fact that these are undergraduate research projects that will not be published is irrelevant, it is the point of teaching to make sure that the researchers of the future are aware of all the necessary steps to make sure the research is valid.

Worse still would be that this is part of a larger project based at a particular department and might be part of a published study.

Ethics is not just about keeping subjects anonymous.