Does your mother know?

Ethical dilemmas are part and parcel of a PhD. I get it! But sometimes when I sit down and think about my PhD topic, I feel like mine really is fraught with a number of really complicated ethical dilemmas that are built into the fabric of the subject matter.

LGBT+

Young People’s

Suicidal thoughts and behaviours

I came to this PhD with a really broad interest in young LGBT+ people’s mental health, but over the course of the first year, through the process of narrowing my topic down, suicidal thoughts and behaviours became my niche. There are clearly a number of ethical dilemmas that this brings with it, and quite honestly no one wants to read all about them in a one-r, so in this post I’m honing in on the parental/carer consent and the looming judgements of an imagined medicine, veterinary medicine, and life sciences ethics panel.

So what are you worried about?

After a lot of checking and re-checking the Economic and Social Research Council’s guidance on doing research with children and young people, it was clear that whilst parental or carer consent is preferred, it is not necessary. This gives me slight relief. It had been suggested to me that proxy consent would be necessary, and for me this was a big risk: mostly because I am worried that this could create one of two highly unsatisfactory situations:

  1. A young person might not feel able participate in my research, despite wanting to at a personal level, because they are not ‘out’ to their parents or carers and thus it would be dangerous.
  2. A young person comes out to their parents or carers in an untimely manner because of their desire to participate in my research (unlikely but possible).

Obviously both of these situations would really concern me, and so I have proposed (in my recent, terrifying submission to my first year annual progress review board – snappy title) that parental/carer consent be gained wherever possible, but for it to not be necessary. Instead where Gillick competent, should a young person not wish to gain consent from carers, they should not have to.

Now, to me even asking for any carer consent feels a little bit weird. I plan to work with young people aged 13-25 and quite honestly at that age, if Gillick competent, these young people could consent to medical procedures. To ask for the addition of carer consent seems in some way to undermine their autonomy. Yes of course participants may tell their carers as part of on-going dialogue! I’m not suggesting that participation would gain anything from utmost secrecy, but to actually ask for additional consent feels undermining, and dangerously assumes that parents understand their child’s participation better than the individual themselves. However, given conventions and given that I need an ethics board to sign off before I ever get to talk to young people, it seemed wise to ask young people who felt able to, to also give carer consent.

Of course though the big scary elephant in the room has to stomp in at some point, so this point might as well be now. That elephant is asking whether these young people can give informed consent, and whether I am sufficiently skilled to successfully assess whether they are able to understand not only what is involved in participation in research, and what will happen to their data, but arguably more importantly, the possible implications for them and their lives, and whether they can emotionally cope with the discussion of this highly personal, sometimes distressing topic. It relies on my judgement of their competence (which of course only reinforces a weird hierarchy that other elements of my research are explicitly designed to resist), and it more broadly becomes a concern centred around risk management and harm reduction.

Addressing this I am currently creating a risk management and harm reduction protocol, which will cover a multitude of possible situations, but will include a specific protocol for emergencies in which a person discloses active suicidal thoughts (including suicide plans). I have experience of safety planning (i.e. planning to ensure that a person can keep themselves safe from suicide) in other contexts, but I get the strong sense (in particular from a course I attended recently) that in a research context it is expected that you pass someone onto a different service for this kind of support. If anyone has experience of creating such protocols chuck me across a message or leave a comment because I’d love to talk to someone about it whilst I’m working on it (or if you’re wrestling with similar dilemmas – strength in numbers!)

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