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.