Anonymous no more?

This month, BioNews is celebrating its 20th birthday and its 1000th edition (see BioNews 1000). And on Wednesday evening (19 June), the Progress Educational Trust – the charity that publishes BioNews – is holding a free-to-attend public event in London discussing direct-to-consumer (DTC) genetic testing in relation to donor anonymity.

These were already hot topics when BioNews was founded 20 years ago, in 1999. Our inaugural edition carried news of the imminent completion of the Human Genome Project (see BioNews 0), which set the stage for the present era of widely available genetic and genomic testing. Later that year, we reported on government discussions that would ultimately lead to the UK removing the legal entitlement to anonymity of sperm and egg donors (see BioNews 18).

For as long as genetic tests have been widely available, there have been cases where such tests have led to unexpected discoveries about relations. Non-paternity is the best known such discovery that can result from a genetic test (see BioNews 321), but there are many other possibilities.

Sometimes these discoveries are stumbled upon accidentally, and sometimes they are sought out deliberately. DNA-based voluntary-contact registers were set up precisely for the purpose of discovering genetic relatives in this way. The first such register to be established was in the UK (see BioNews 229), and there is also one in the Netherlands.

Now, it is becoming increasingly easy for people to make discoveries about their genetic relatives, thanks to the growing availability and popularity of DTC genetic tests (see BioNews 939).

These tests are marketed and bought for a variety of different purposes, ranging from health (see BioNews 300) to recreation (see BioNews 435), but the reason that someone buys such a test does not necessarily match up with what they find out. Discoveries about genetic relatives can have a dramatic impact on people and their families, especially in situations where a person has been conceived using donor sperm or eggs.

A person might discover from a DTC genetic test that they are donor-conceived, if they did not know this already. This can happen if they appear to be of a different ethnic heritage than they expected, if they discover that they have DNA matches with close relatives they didn't know existed, or if they discover that they don't have DNA matches with their known close relatives.

In some cases, people opening their DNA 'match list' for the first time are being given matches with genetic half-siblings – or even a genetic parent – whose existence was not previously known to them. Other people, who already know that they are donor-conceived, take DTC genetic tests in order to identify the relevant donor. Conversely, some donors take DTC genetic tests in order to identify and connect with their genetic offspring.

Surprisingly, it is not necessary for a person to have joined a DNA database – or to have ever taken a genetic test – in order for them to be identified as someone's genetic relative. In other words, it is possible for a person to be identified as someone's genetic relative without that person's involvement, consent or knowledge. By working with networks of genetic matches in DNA databases, and triangulating on the family trees of the matches, it is often possible to identify a sperm donor or egg donor even if they have not been tested directly.

Consider, for example, a teenage boy who made headlines more than a decade ago. This boy took a DTC genetic test, joined a DNA database, was contacted several months later by two men on the same database who appeared to be genetically related to him, and then – by making further deductions from the rare surname of these two men – successfully identified a third man not on the DNA database as his genetic father.

More recently, the novelist and memoirist Dani Shapiro took a DTC genetic test which led to her discovering – in her 50s – that she was donor-conceived. Further investigation using a DNA database led to her discovering and contacting her genetic father, and she went on to write a book about the matter entitled 'Inheritance: A Memoir of Genealogy, Paternity and Love'. Discussing the book in a newspaper interview, she argues: 'Anonymity is over. We need to ask if the guarantee of anonymity made by sperm banks is still valid when the world has changed – and the science has changed.'

Meanwhile, the latest guidelines from UK professional bodies on the use of donor sperm and donor eggs include the following recommendation: 'Clinical teams should provide support, guidance and information on the availability and implications of genetic ancestry testing, and the possible inevitability and lack of control over identity that an individual may have if a blood relation undergoes such testing. This applies to donors, recipients and their families.'

Our event this coming Wednesday, which is entitled 'Anonymous No More? Donor Conception and Direct-to-Consumer DNA Testing', is being produced in partnership with the University of Liverpool. The event also has sponsorship from the European Sperm Bank and the London Women's Clinic, and it has already been the subject of advance press coverage in the Daily Mail.

At the event, speakers with contrasting perspectives – including an academic and author, an anonymity-era sperm donor, a donor-conceived person and a regulator – will explore questions including:

• How reliable, and how well understood, are DTC genetic test results and the inferences people make from them? Is there any risk of misidentifying people as genetic relatives, when they are not?

• What decisions and responsibilities are involved in seeking, finding and contacting (or not contacting) genetic relatives who were not previously known to you?

• What responsibilities – if any – do DTC genetic testing companies have towards their consumers, in relation to discoveries about genetic relatives? What should these companies be telling and advising people? How, and by whom, are these companies regulated?

• Have the responsibilities of fertility clinics, sperm/egg banks and regulators – towards fertility patients, donors and donor-conceived people – been changed by the advent of DTC genetic testing?

• In places where fully anonymous sperm or egg donation is still permitted, is such anonymous donation being made impossible in practice, by the advent of DTC genetic testing?

• In places where fully anonymous sperm or egg donation is not permitted, but where there is a delay between the birth of a donor-conceived child and the donor's identity having to be made available (in the UK there is a delay of 18 years), could this be made impractical by the availability of DTC genetic testing?

• Is it possible, necessary or desirable to do anything to protect the anonymity of past sperm or egg donors, in light of DTC genetic testing (see BioNews 999)?

• What can we learn from the experiences of donors, donor-conceived people and their families in the Australian state of Victoria (see BioNews 998)? This state has recently changed its laws to make all sperm and egg donors identifiable not just prospectively but retrospectively as well (thereby removing the anonymity of past donors without their consent).

Further details of Wednesday's event can be found here. Please note that the event is taking place in central London (although the venue is part of the University of Liverpool, it is in the university's London campus). The event is almost fully booked, but there are a few places still available – register online now if you are able to attend. We hope to see you there.

To celebrate the grand occasion of our 1000th edition, download and print out the 'BioNews 1000' sign, and then take a photo of yourself (and/or your friends, family, colleagues or pets!) holding it.

Please share your pictures on social media with the hashtag #BioNews1000 (also email your pictures to sstarr@progress.org.uk and we will share them too).

Meanwhile, we are asking all of our readers to please donate at least £10, to help BioNews continue as a free service for another 1000 editions. Make your donation here, or alternatively see other ways to donate here.