Jack Nunn started his PhD at La Trobe University in Melbourne, Australia, eager to immerse himself in genomics research, he decided to focus on his own family’s DNA. As he tells geneticist Kat Arney, he soon uncovered a remarkable personal connection to one of the most controversial fertility clinic scandals of all time.hen
It turns out hundreds of people, perhaps more than a thousand, were artificially impregnated by British scientist Bertold Wiesner, the husband of fertility clinic pioneer Dr. Mary Barton, beginning in the mid 1940s. Barton found it too challenging to find suitable donors, so she turned for help to someone who was both reliable and discreet: Her husband Bertold. Nunn’s mother has now been identified as one of hundreds, maybe thousands, of children seeded by Wiesner.
After starting her clinic in the waning days of WWII, Barton insisted on total secrecy about what she was doing, telling the parents they should never let their children find out how they had been conceived or identify the donors. Because of the stigma about surrogate parenthood at that time, her actions were seen as well-meaning. To further guarantee parental anonymity, the records from the clinic are thought to have been deliberately destroyed.
Then came DNA tracing and hereditary tests.
The experiences of the Wiesner-Barton Brood underscore how dramatically ethical attitudes can change. As Jack Nunn has experienced personally, it can take many years for the unexpected repercussions of scientific and medical advances to emerge. Estimates suggest that he is part of the largest single ‘ancestor cohort’ on the planet.
It’s been impossible to ignore the rise in direct-to-consumer and medical genetic testing over the past few years. And as the cost of whole genome sequencing falls – and the potential personal, health and financial value of genomic data rises – this trend is only likely to continue.
In response, Nunn has now started a number of initiatives aimed at increasing public engagement and dialogue around science and genomics, including founding a non-profit called Science For All. You can also follow him on Twitter, @jacknunn.
Nunn’s family never expected to discover such a dark truth about their origins from a simple test, yet thousands of people all over the world are merrily taking genetic tests and putting their data online. So do people really realize what they’re signing up for when they spit into a tube or squirt out a blood sample?
To find out more about the ethical issues around the fast-changing field of consumer and medical genomics, Arney also speaks with Anna Middleton, Head of Society and Ethics Research at the Wellcome Genome Campus in Cambridge. There’s more about her work looking at the ethical, legal and social implications of genomics online at genomethics.org, and she also tweets at @genomethics
Full transcript, links and references available online at GeneticsUnzipped.com
Genetics Unzipped is the podcast from the UK Genetics Society, presented by award-winning science communicator and biologist Kat Arney and produced by First Create the Media. Follow Kat on Twitter @Kat_Arney, Genetics Unzipped @geneticsunzip, and the Genetics Society at @GenSocUK