Sunday, 30 January 2011

Does having children affect views on genetic testing?

Fellow Cantabrigians down the road at Genomes Unzipped held a reader survey at the tail end of last year. I’ve just got round to delving into the raw data.

I’m interested in the differences in opinion between men and women, and how having children affects those views. The GUZ team noticed that no female research geneticists would be willing to donate their full genome data without strings attached – I’ll comment on this later.

I’ve also done some digging of my own and found that becoming parents seems to affect the views of men but not women.

First, a look at qualifications and children. 32% of the female respondents have a PhD, compared with 47% of men.  I wondered if, in this sample of women, having a PhD effects whether or not you have children. There turn out to be a clear difference between the sexes: 41% of female PhDs don’t have children and don’t plan to, compared to 19% of men. I also looked at what jobs the 10 women with PhDs who had children were doing – nine of them were working in science.

So far the data are both encouraging and depressing. Depressing in that it seems less possible for women to have both a PhD and a family, and encouraging because those that do combine the two can stay in science (or perhaps return to science). And the one person that has a PhD and kids and isn’t working in science – that’s me (although I blog about genetics when I’m not wiping sticky fingers or jamming toys back into small spaces, but science is not currently my main occupation).

There are loads of caveats here – having kids doesn’t mean they are still living at home and so directly influencing career choice; the sample size for women is small; I answered the employment question based on what I am currently doing, but some may have answered with their pre-kids job; and overall less women in the survey than men have children regardless of education – 46% of women compared with 55% of men.

The sample is clearly biased. I wonder if scientifically trained women with children don’t have time to fill in internet surveys. And perhaps women with PhDs who fill in internet surveys don’t have time for children.

Then I looked at how having children changes your views about sharing genetic data. First the question “should newborn babies routinely have their genomes sequenced once the technology to do so becomes affordable?”. I started with women, suspecting that they may become more cautious after becoming mothers, but there was no difference between those with and without kids – 43% of those answering yes to the question have children compared with 47% of those saying no.

However, the men’s data gave a different picture. Those answering yes had a similar family profile to the women – 49% with children. But 65% of those answering no had kids. It seems that men are more likely to reject the sequencing of newborns if they are fathers themselves. The GUZ team had commented on the overall difference between men and women in their views on sequencing newborns, the analysis here shows that family circumstances may play a part.

I wondered if this relationship was present for any of the other hot potato questions on the survey. I looked at “should parents/guardians should be able to consent minors for direct-to-consumer genetic testing?”. A similar pattern was evident, although not as clear cut. 47% of women answering yes have children, as do 42% answering no. For men, 52% of those consenting have kids, compared to 62% who would refuse. Interestingly, for both questions, women become less cautious after becoming parents – the opposite to men.

I had a quick peak at respondents’ views on sharing their own genetic data. In the interest of speed I including only the extreme answers – either “Not under any circumstances” and “Yes, and I would be happy with the data to be publicly associated with my name” for whole genome sequencing (rather than genome scan data).

Here, rather surprisingly, for both sexes, those with children are more likely to agree to no holds barred data release (71% of consenting women have kids, and 64% of consenting men). This compares the “no under any circumstance” people – 43% of the women and 58% of the men having children. Note that the sample size for the consenting women is small so the results may not be meaningful.

The obvious caveat for these investigations is that the survey did not look at the views of the same people before and after they had kids. And there are many confounding variables – for example parents tend to be older than non-parents and views change with age; plus those who have children tend to be less worried about scaring off potential genetic recombination partners.

And finally, what of the intriguing result that no women research geneticists agreed to wholehearted  release of their data. Firstly, the sample size is small so it is not clear if this result is real. Secondly, I am one of the six non-geneticist fully consenting women and so cannot shed much personal light on those more wary.

I can say I answered the question instinctively based on gut reaction and without detailed introspection. On reflection I have no reservations about people knowing my personal data. This may be because I am self-employed and knee deep in family so not concerned about alarming potential employers or breeding partners. I do admit to ambivalence about how the data release would affect my relatives, any major genetic diseases in my family would probably be a show stopper.

Here ends my analysis. It’s been done swiftly by spreadsheet hacking (coloured by entrenched feminist views) but I hope offers some food for thought.

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