Book contents
Appendix
Published online by Cambridge University Press: 30 April 2022
Summary
Scenario: the Browns from Preston: an ‘ordinary family’
Theresa, grandmother died at 75 with Alzheimer's disease
John, 65, Theresa's son, becoming forgetful Cath, 60, John's wife, concerned about her husband and son
Ben, 32, John and Cath's son, single, uses genetic testing kit from 23andMe, found to have an ‘increased risk of Alzheimer's disease’
Louise, 36, John and Cath's daughter, married, infertility issues, uses ovulation microscope
Yusef, 30, Louise's husband, infertility issues
Act 1: making sense of genetic data
Ben is a single man with a good job working in a small engineering company. He likes computers and his smartphone and enjoys downloading films and surfing the web. One of his recent favourite websites is called 23andMe. This is a company based in the US that sells genetic testing kits directly to the public. A friend at work had read about 23andMe in the magazine Wired and mentioned it over lunch one day. He had been quite excited about it.
Three months ago, Ben sent off for a genetic testing kit from 23andMe's website, and when it arrived, he followed the instructions as pictured in the package. He registered the kit on the website and filled in the online form with his name, gender and date of birth. It also asked him if he wanted to take online surveys and be part of 23andMe's research studies. He read through the consent document and ticked the box: ‘Yes, I’d like to participate in making new genetic discoveries with 23andMe Research’. He took out the small ‘spittoon’ that came with the box, spat into the tube and sealed it according to the instructions. His favourite part of the kit was the biohazard logo on the plastic bag that came with the tube.
Five weeks later, he got an email from 23andMe saying that his results were ready and that they would tell him all about his ‘personal genome’, about the patterns in his DNA and what they mean for his health, the way his body works, and even his family history running back centuries. Ben is healthy, and did not expect any bad news. His main reason for having the test was curiosity. He read through his results, which said all kinds of things, such as that he was unlikely to be a sprinter and that his earwax type was wet.
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- Living DataMaking Sense of Health Biosensing, pp. 159 - 164Publisher: Bristol University PressPrint publication year: 2019