Ancestry, privacy and the family tree

In ‘Brit(ish): On Race, Identity and Belonging’, Afua Hirsch writes, “It’s often said you cannot do anything until you know who you are. As social creatures, part of knowing who we are is knowing what group we belong to.”

The first group most of us belong to, at least in a physical sense, is our family. Therefore, when we feel compelled to embark on the complex business of untangling our sense of self, the threads of family and ancestry are often the first we pull at.

As I search for a sense of belonging, I’ve started to realise just how important my grandparents’ story is to my own. But the more I’ve learned, the more my feelings about my ancestry have shifted in disconcerting ways.

My great-great-grandfather on my mum’s side was the celebrated Australian artist Norman Lindsay – a man who was played on screen by Sam Neill and has a museum dedicated to his work. My grandma, the writer Cressida Lindsay, was proud of this heritage, and as a child, I was too.

But when Grandma died in 2010, letters full of offensive language surfaced from her father, Philip Lindsay, in which he suggests that Norman excommunicated her because of her relationship with my granddad Leon, who was a Jamaican immigrant.

“Like most Australians, he has a horror of colour and mixed marriages,” writes Philip. “It must have been an appalling horror to him when he found out he had a half-caste great grandchild. He knows all right. I heard it was quite the joke at the time in Sydney.”

For his own part, Philip wrote to his brother Jack when he heard Grandma was pregnant with Mum to say, “When you see Anne (his nickname for Grandma), you can tell her we want nothing more to do with her if she brings the child here. She can come alone whenever she likes.”

Pride in my prestigious ancestry turned to sadness. These people rejected my mum and granddad. Leon died when I was ten, but I remember a kind, gentle, smiling man with a lively mind. My curiosity about him had always been eclipsed by Grandma’s exploits and the Lindsay name. Now I found myself disconnecting from the Lindsay side of my ancestry – shaking my sense of belonging to its core.

Siblings to spare

Learning more about Leon seemed fundamental to understanding, as Hirsch puts it, which group I belong to. But – other than knowing he grew up in extreme poverty in Jamaica, without a dad around – my mum and her siblings know little about his past.

How could I find out more about him? Should I, like millions of others, put a swab in my mouth and send off my DNA to try and fit more of the pieces together? I know that doing so can have explosive consequences.

Last year my friend Jack Nunn told me something incredible. When he started studying for his PhD in public health genomics, he decided it was time to get some personal experience of DNA testing. He bought his mum, Barbara, a test to see if she could finally find out who her grandfather was.

When she submitted her results to Ancestry.com, no matches turned up. Then, out of the blue, she received an email from Canada. She’d matched as the half-sister of someone on a genealogy site called GEDmatch, which can access results from other databases.

Before long it became clear that Jack’s mum was conceived with a sperm donor – a man named Bertold Wiesner – who fathered hundreds of children at the donor clinic he ran with obstetrician Mary Barton in the 1950s and 1960s.

Barry Stevens, a Canadian filmmaker and one of Wiesner’s children, has tracked down 45 of his half-siblings. In his documentary ‘The World’s Biggest Family’, Barbara describes what it was like to find out her father wasn’t who she thought he was: “It’s like you’re standing on the edge of the sea when you’re paddling and the waves go out and it pulls the sand from under your feet.”

Jack told me he feels lucky to have found new relatives. But the discovery did change how he felt about nature and nurture: “This experience really asked me to think what does ‘family’ mean? Are these people ‘DNA strangers’, as my wife puts it, blood relatives, or actual family? Once I met some of them in person, it was a very strange feeling of familiarity: similar mannerisms, very similar sense of humour.”

Some of Jack’s relatives felt their sense of belonging improve when they learned the truth. In Stevens’ documentary, one of the siblings, David says, “We all have a right to our own story. And that seems to me to be incontrovertible. To be human is to have a story, and to have a story one must have the true story.”

The power of knowing where you came from

For Jack, uncovering his ancestry has clarified his place in the world. And as someone working in public health genomics, he knows how important genomic research can be to improving health outcomes for all living beings, not just humans.

“What I love about genomics is that it’s opening up a new frontier on understanding ourselves,” Jack says. He’s Director of Science for All and involved with Standardised Data on Initiatives (STARDIT), both of which take a collaborative approach to research, and aim to explore where we belong within entire ecosystems, not just family trees.

But there are very real psychological impacts to discovering your family is not what you thought it was, or finding out you are susceptible to an inherited health condition. The Human Fertility and Embryology Authority is concerned enough about the negative effects to call for ancestry tests to come with warnings.

Privacy and ethics also come into play when we part with our genetic data. “All individuals are vulnerable to exploitation,” Jack explains.

“However, Indigenous peoples, communities of people affected by rare diseases, and groups like my family are particularly vulnerable, as they are of particular ‘interest’ to researchers. Companies like Ancestry and 23andMe sell access to our data. This is not always ‘informed consent’ – it’s ‘tick-box’ consent borrowed from Silicon Valley, and it’s just not good enough.”

Jack says, “Involving people is going to be central to public trust and participation in future genomics. If we don't get that right, it won't happen. STARDIT is one way we’re trying to achieve it.”

Beyond people self-excluding from genetic research, Jack is worried genomics could contribute to racial division and marginalisation. “My greatest concern for the future is that people will use DNA to perpetuate their own racist constructs and look for difference, when we should really be thinking of all humans as part of one great big family.”

Racist constructs have had enough negative impacts on my ancestors. It alarmed me to realise my DNA could be used in this way. While I was faltering, however, things moved on without me. A relative who had already submitted their DNA to a database received a match in the US. Leon had a brother and his descendants wanted to get in touch. They sent pictures and, looking at their smiling faces, I found myself feeling elated.

I still wouldn’t give up my genetic data without assurances over how it was used. However, getting a glimpse of my true story made me feel much more willing to hand my DNA to someone I trust, like Jack, who could take me beyond my family tree to making sense of my place among the soil and the stars.