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The Fertility Show


 

How personal genomics spells the end of donor anonymity

03 May 2016

By Professor Joyce Harper, Debbie Kennett and Dr Dan Reisel

Joyce Harper is Professor of Human Genetics and Embryology at University College London; Debbie Kennett is an honorary research associate in the Department of Genetics, Evolution and Environment at University College London; Dan Reisel is a research associate at the Institute for Women's Health, University College London

Appeared in BioNews 849

A significant proportion of fertility treatment is 'third-party reproduction' – i.e. it  involves the use of donor gametes or embryos. Sperm donation has of course been practised for decades, as there is no need for a clinic to be involved, but egg donation does require a fertility clinic to perform the egg collection. Before regulation and accurate records, there were many donor-conceived people who could not find any information about their donor. Hopefully, all clinics now keep accurate records of which donor egg or sperm was used, but in the majority of countries donation remains anonymous.

Anonymous egg and sperm donation means that thousands of people have been unable to discover the identity of their genetic parent. In some cases, children are not even told how they were conceived, which could result in this information being exposed in later life.

In both the UK and USA there are donor registries to which donors and donor-conceived people can add their genetic information. The Donor Sibling Registry in the US provides a safe space for donors to connect with their offspring and for donor-conceived people to search for their half-siblings and donors. In the UK, results from DNA analysis are shared on the Donor Conceived Register, and donors are encouraged to add their DNA to this database. Many people have found half-siblings and their donor using this method, and the parents of donor-conceived children are also using these databases to search for their child's donor siblings.

As we report in a recent article in the journal Human Reproduction, there is a general increase in the number of people using direct-to-consumer genetic tests, which are often used by people who wish to trace their family tree. Autosomal DNA tests offered by 23andMe, AncestryDNA and Family Tree DNA include a 'relative-finding feature' that matches people with their genetic relatives based on the amount of DNA shared. With falling prices, the databases have grown rapidly, and over three million people have already been tested.

We are concerned that people using these ancestry databases to trace their family tree may accidentally discover unknown genetic lineages resulting from fertility treatment.

A sperm or egg donor does not even have to be in the genetic database to be identified because identification is possible if there is a match with a close relative – even a first, second or third cousin. Anyone who has donated, or is about to donate, eggs and sperm needs to understand that they could be traced by their donor-conceived children even if they have donated anonymously. And, if the donors' family members have not been told about the donation, they might inadvertently learn of the secret.

What if parents who had used donor eggs or sperm had never told their children that they were donor-conceived? There is a now a very real possibility that their children could find this out through personal genetic testing, which could potentially lead to a traumatic breakdown of trust with their parents.

Parents contemplating using a donor to conceive must be informed that genetic testing in the future will increase the likelihood of their children finding genetic relatives, and that the absence of disclosure can have negative implications. Parents should therefore be encouraged to disclose the use of donor eggs and sperm to their children. If this is done early on in the child's life, there is every likelihood that it will not be perceived as traumatic for the child.

These concerns make urgent a wide-ranging societal conversation about how to best safeguard and promote the interests of donor-conceived offspring while protecting the rights of donors.

There is a need to ensure that new genetic information is communicated in a way that promotes both the safety and privacy of the offspring and the donors. Fertility clinics should also develop their own guidelines and procedures to enable them to integrate subsequent genomic data into their existing consent agreements. But the reality that all parties concerned must be made aware of is that, in 2016, donor anonymity simply no longer exists.

SOURCES & REFERENCES

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

11 July 2016 - by Rachel Siden 
Donor-conceived children born to single women are equally well adjusted as those from two-parent donor-conceived families, according to a recent UK study examining the views of single mothers and children aged between four and nine years old...
09 May 2016 - by Craig Macpherson 
The development of a portable DNA laboratory for professionals and enthusiasts raises questions about how regulations can possibly protect consumers in this rapidly developing field...

02 February 2015 - by Dr Joyce Harper 
Partially out of curiosity and partially as an assignment for Radio 4's PM show, I was one of the first to 'get to know me', as their company slogan goes, and have my genome analysed by 23andMe...

HAVE YOUR SAY
Connecting via DNA Since 2005... (DSRWendy - Updated on 04/05/2016)
My son first found his formerly anonymous sperm donor via DNA testing in 2005, so this is not a new phenomenon. Since then, we have assisted, and have heard about hundreds of other people connecting with this methodology. We first reported this in the New Scientist Magazine in November of 2005, and have presented talks around the world to the reproductive medicine industry. We have had many face-to-face conversations with sperm bank directors about this, for many years. And we have reported this in our research for many years.

So the reproductive medicine industry, in the US and abroad, including the UK has known about this possibility for 11 years, yet has continued to promise anonymity (sometimes only 16-18 years of anonymity) to donors and ignore the role that DNA continues to play in connecting offspring, at any age, with half siblings and donors.

The Donor Sibling Registry (DSR) is a worldwide registry, with 50,000 members in 104 countries. We have matched people in more than 50 of those countries, including the UK where we presently have almost 600 UK families registered, and have matched 120 UK people with their half siblings and/or their donors.  

We hope that at some point, the clinics and facilities in the UK notify parents, donors, and offspring that the DSR is a viable method to connect with genetic family. Families can connect with half siblings and donors at any time, as we believe, (and have plenty of published research to back up our 16 years of anecdotal stories) that connecting before the age of 18 can be an extremely positive experience for all those in the donor family.

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Published by the Progress Educational Trust

CROSSING FRONTIERS

Moving the Boundaries of Human Reproduction

Public Conference
London
8 December 2017

Speakers include

Professor Azim Surani

Professor Magdalena Zernicka-Goetz

Professor Robin Lovell-Badge

Sally Cheshire

Professor Guido Pennings

Katherine Littler

Professor Allan Pacey

Dr Sue Avery

Professor Richard Anderson

Dr Elizabeth Garner

Dr Jacques Cohen

Dr Anna Smajdor

Dr Andy Greenfield

Vivienne Parry

Dr Helen O'Neill

Dr César Palacios-González

Philippa Taylor

Fiona Fox

Sarah Norcross


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