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Looking for genetic relatives in genetic databases is harmful and wrong

20 May 2019
By Professor Guido Pennings
Professor Guido Pennings is professor of ethics and bioethics at Ghent University, Belgium, and director of the Bioethics Institute Ghent.
Appeared in BioNews 999

More and more people are using DNA testing websites. The curiosity about one's ancestry seems to be growing, especially in the USA. In doing so, millions of people are giving away all rights to their genetic information without much concern about what can or will be done with it.

Consumers may have three goals in mind when using these services: health-related genetic information, ancestry ethnicity searches and finding genetic relatives. In recent years, more and more anecdotal evidence is showing that looking for relatives in genetic databases is not a harmless or innocent activity. There are three types of searches that are particularly problematic: offspring looking for their donor, offspring looking for donor siblings and donors looking for their offspring.

In donation systems where identity is open, and through voluntary donor registers, offspring and donors may look for each other. The crucial point is that all participants engage with such systems voluntarily. And, hopefully, they are fully informed when they do so.

This element is missing when genetic databases are used for these ends. Searching for donors through genetic databases unilaterally revises the agreement with the donors who had been promised anonymity. It is a clear breach of the right to privacy of the donor, which may have serious consequences for them and their family.

In addition, it violates the rights of people whose genetic information is used for purposes not intended by them. For instance, someone may undergo genetic testing to find health-related information but their DNA is later used to trace family members for forensic purposes (see BioNews 796). In the same vein, people who registered in a database will not have intended that a family member be exposed as a gamete donor.

The main impact of ancestry databases will be on donor siblings. People can easily contact someone who they suspect to be a donor sibling, but who is unaware of their donor conception. This action, as well as donors looking for their offspring, constitutes a violation of the rights of parents to organise their family as they see fit. It should be up to the parents to disclose the donor conception to the child, even in countries that abolished donor anonymity. These types of searches cannot even be justified by a presumed right to know one's genetic parents. These two types of searches can only be explained by the belief that relationships are and should be based on a genetic link.

It is surprising that there is not more opposition to these tests. The largest number of potential problems will be found outside the gamete donation setting, for example, non-paternity findings. Contrary to the opinion about the right to know in gamete donation, most people do not defend a similar position for non-paternity.

But even those who defend the right of donor offspring to know their genetic parents should be opposed to the present situation because of the circumstances in which the information is provided. Even if they do not care about the violations of other people's rights, they should be concerned about the risks involved.

The elaborate systems of support and counselling that exist in the countries that have abolished donor anonymity – and particularly in Victoria, Australia, which has forced retrospective identifiability (see BioNews 998) – demonstrate that the consequences for the people involved can be serious. Still, the fact that the legislators in Victoria forced both donors and donor-conceived people into a frame that may cause them trouble, shows that the wellbeing of the people is not their prime concern either.

The same attitude shows in donor offspring looking for their donor or siblings: they demonstrate a complete disregard for the possible impact of their search on other people. They know that they may cause serious personal and familial problems for others but they believe their personal interests prevail. However, they need to justify their decision since the violation of their presumed right to know their genetic parents does not justify them violating the rights of others.

The question, then, is what to do about it? These tests are offered by commercial companies that run their business as companies do. Social and psychological problems are not their main concern. They seem to consider their part of the job done by putting a warning, however vague and noncommittal, about the possible unexpected and uncomfortable findings.

However, if more evidence comes in that shows that the findings of these tests are causing turmoil in people's lives and are socially and psychologically disruptive, it makes sense to forbid them to offer this service. There is a precedent: in 2013, the US FDA (Food and Drug Administration) issued a warning to 23andMe to suspend all health-related genetic tests (see BioNews 734). Given the potential for harm to consumers, a similar move should be considered for databases that allow people to find relatives.


The issues raised in this article will be discussed at the Progress Educational Trust's free-to-attend public event 'Anonymous No More? Donor Conception and Direct-to-Consumer DNA Testing' in London on the evening of Wednesday 19 June 2019.

Find out more here and register to attend here.

SOURCES & REFERENCES
RELATED ARTICLES FROM THE BIONEWS ARCHIVE
24 June 2019 - by Dr Yvonne Collins 
The Progress Educational Trust (PET), which publishes BioNews, held a public event in London to discuss direct-to-consumer genetic testing in relation to donor anonymity...
17 June 2019 - by Sarah Norcross 
This coming 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 genetic testing in relation to donor anonymity...
3 June 2019 - by Vince Londini 
In a recent commentary, Professor Guido Pennings outlined his views on donor anonymity and DNA-testing databases. Professor Pennings seems to advocate for the contractual rights of anonymous donors by placing such in opposition to the increasingly recognised, if not yet codified in law, moral rights of donor-conceived people...
HAVE YOUR SAY
Comment (User:143025 - 20/05/2019)
This type of testing will not be overturned.  The 2013 FDA precedent isn't applicable to genetic matching in this case.  I'm surprised to even read this viewpoint.  Each person is free to opt-in/out of matching at the various databases.  Of the 30+ tests I've bought/administered each and every tester has wholeheartedly wanted to be opted in to further our genealogy goals ranging in ages from 30-96.
Comment (User:112683 - 20/05/2019)
Professor Guido Pennings, I have a few questions for you.


Do you know who your parents are? Do you know who your grandparents are? Do you know who your great prandparents are? I suspect you do. Only a person with full access to their authentic idnetity could write such a thoughtless opinion. The gamete 'donors' have already made a decision that suits them - to 'donate'. They do not then get to control the entire life of the person created. Each individual has the right to an authentic identity. It is the absolute right of the person created to have that information. To be denied it turns them into a commodity. right t
Comment (User:114377 - 20/05/2019)
If the consequences can be serious then this is an argument for properly informing people before they use these tests. It's also an argument for saying that anonymity shouldn't be permitted in the first place.
Comment (User:118187 - 27/05/2019)
Professor Pennings considers the impact of genetic ancestry testing on donors and commissioning parents but overlooks the rights of the individuals who were conceived as a result of donor conception. They were not party to the contract of anonymity and have no obligation to be bound by a contract they did not sign. It is widely recognised that the rights of the child trump the rights of the adult. Everyone has a right to knowledge about their genetic heritage.

There has been a massive growth of the genetic genealogy databases in the last few years with around 30 million people now having tested. AncestryDNA, the market leader, announced this week that it had tested over 15 million people. As a result of this growth in the databases, relationships can be disrupted not just by people searching for their biological parents but also by people making unexpected discoveries about their ancestry simply because they decided to take a DNA test to help with their family history research. Family secrets can come to light when the person receives unexpected admixture results or when matches are received with previously unknown close relatives such as half-siblings.

The genie is already out of the bottle so the question now is how to deal with the consequences. I agree that there is a need for greater support for people who make these surprise discoveries. Some of the testing companies do now train their customer support teams to help people who have unexpected findings from a DNA test. The Donor Conception Network in the UK provides a supportive network and can refer people to specialist counsellors.

There is a simple way to stop the social, psychological and emotional fallout from these searches and that is not to ban genetic testing but to ensure that everyone is given access to their genetic heritage from the outset.
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