Still to open Recruiting patients to provide details from existing genetic data for dissertation- any age, country, sex, gender etc.

[Utsikt]

Really?!

I couldn’t find it when looking for it. Thanks for pointing it out. I’m sure UK privacy laws also cover genetic information.

 

[Trish]

I didn't see the questionnaire before you took it down. If you are going to ask people about their ME/CFS symptoms it would probably be a good idea to use the NICE guideline list of core symptoms and other common symptoms of ME/CFS rather than trying to think them up for yourself or basing it on your own experience. I assume part of your project would be researching more about ME/CFS so you will need to use recognised resources.

 

[Utsikt]

I hadn't heard of BPS until just now- did a very cursory google. People who focus solely on emotions are... it feels very much like 'it's in your head' territory- is that what that theory is like?

There are a lot of them, and they usually posit that psychosocial factors influence the body in various ways and that that makes you ill somehow. The how is never clear to me, and the solution is always to think and behave differently.

 

[Hutan]

Would it be feasible for an undergraduate project like this to simply ask people not to reveal their real name. So they would fill in the questionnaire on a something like survey monkey, using a pseudonym of their own choosing. Does that get around the ethics problem?

Ethics approval should consider issues that go well beyond participants' privacy. An underpowered study that could be vulnerable to selection bias and that is focussed on a gene popularly understood to be 'the warrior: worrier gene' could easily have some very significant ethical problems without careful management.

The survey asked for people's date of birth. @Rachelsmallfry, have a think about whether you really need that.

Depending, consider trying to get access to decodeME, UK Biobank, All of Us, or PrecisionLife to ask your question.

That's a great idea. The UK Biobank data isn't the greatest when it comes to ME/CFS characterisation though.

 

[hotblack]

Here’s the researcher access page for DecodeME, it seems like the best possible, ready made, validated data set.

Researcher Access | DecodeME : The world's largest ME/CFS study | Institute of Genetics and Cancer

To accelerate research towards possible diagnostic tests and treatments for ME/CFS, DecodeME has built the world’s largest data set on ME/CFS, as a managed access resource for future research projects.

institute-genetics-cancer.ed.ac.uk

Some data (like the summary information from the GWAS) is also freely available, can be downloaded by anyone and looked at with various tools. I can post the LocusZoom around COMT of that would be of interest.

 

[Utsikt]

The eagerness to get started is understandable and it’s the uni that’s responsible for enabling the students to do things right, but here are a few things to consider before gathering data:

Which data do you actually need?

What are the implications of opening for sending you the whole genome rather than just two genes?

Are there legal implications in including international participants, especially when you’re asking for genetic info?

Which measures are taken to ensure secure data storage (e.g. keys for ensuring anonymity by keeping data separate from ID)?

How can the participants withdraw consent? What does that entail for your work?

How will the results be disseminated?

Have the participants received enough information about the purpose of the study and the rationale behind it?

 

[Trish]

Can you tell us which OU course it is?

I think this is an important factor in whether it makes sense to go through the whole ethics approval process in order to collect data and the questions you ask in the questionnaire and your aim with the study.

If, for example, the course is on statistics and research methodology or similar, it might be better to choose a less medical subject so the ethics questions are less pressing and the medical interpretation may be more outside your field. If it's a genetics or medical science course, then the topic makes more sense.

I understand your description of OU courses requiring more self directed study - I have one and a half OU undergrad degrees as well as one from a traditional university. But even with the OU, there are clearly defined task descriptions for projects and a tutor and course materials which will guide you through the process. You say you haven't started the module yet. I understand your eagerness to get started on testing the feasiblity of your project idea, but maybe wait until you have a chance to get on further with the module before fixing on this as your project.

 

[Rachelsmallfry]

I am doing a Biology degree.
I am definitely getting ahead of myself! Mostly I wanted to see if I was able to get enough data first for it to be a viable research project. Ignore the questionnaire if you have it, it will get reworked properly based off proper guidelines (probably the not-so-NICE ones). I sort of hammered it out as a preliminary to get my thoughts on paper.

I don't want to put lots of resources into pursuing an idea if it turns out it isn't viable which is why I really am just at step 1 right now. As I am a lowly undergrad with no research experience (as you can tell) I am limited with what data I can access. Once I am assigned a tutor/supervisor I will be able to actually answer some questions, see if its viable and find out more.

I can share the legal paperwork template
when I'm back at my PC. I'm balancing this module with another and the mental load really exhausts me so apologies that my request and responses are so scattered!

All this feedback is really helpful.

 

[Utsikt]

Mostly I wanted to see if I was able to get enough data first for it to be a viable research project.

That’s understandable, but it can’t include gathering data from participants. At most, doing a preliminary survey to gather comtact info from people that might be interested in being contacted for participating later might be allowed, but I’m not sure of the specifics here.

I can share the legal paperwork template
when I'm back at my PC.

If the supervisor says it’s okay, the uni probably has to take responsibility for any mistakes. But if it’s generic, it might not have considered all the nuances of doing a multi-national genetics project. That’s probably a question for the supervisor.

 

[Rachelsmallfry]

That’s understandable, but it can’t include gathering data from participants. At most, doing a preliminary survey to gather comtact info from people that might be interested in being contacted for participating later might be allowed, but I’m not sure of the specifics here.

If the supervisor says it’s okay, the uni probably has to take responsibility for any mistakes. But if it’s generic, it might not have considered all the nuances of doing a multi-national genetics project. That’s probably a question for the supervisor.

Yes I realise that now, its why I removed the questionnaire. I'll edit my initial post to make it clear that I'm now gathering interest and people willing to participate, and include the information in regards to ethics and data once I speak to my tutor/advisor.


Thanks