What to consider before taking a commercial DNA test
DNA tests can offer exciting new knowledge about yourself and your genetic ancestry, especially if you or your child is donor-conceived. But there are several ethical aspects you need to consider.
Lotte Sørensen
DNA tests have become much more accessible within the past few years and just by spitting into a test tube, you can learn interesting facts about your health, ethnic origin and genetic connections. This can be particularly appealing if you are donor-conceived or have donor-conceived children.
And while there are a lot of potential positive experiences to have when getting the chance to connect with i.e. genetic relations, there are some things you need to consider.
Ask yourself: What are you looking for?
Are you curious about your ethnic origin? Are you looking for genetic relations? Or maybe you want to know of potential health risks in your genes? Get clear on what you expect and consider how you will feel if you receive less information than you hoped – or if you uncover uncomfortable information or serious health risks.
You should also be aware that even though you find genetic connections, you are not guaranteed that they want to connect – or that you will form a close relationship. Perhaps you find relatives who are not interested in being found if, for instance, they haven’t submitted their own DNA, but are found through a family member.
You are not just sharing your own data
This leads us to an important fact: Your DNA isn’t just information about you. It’s closely linked to your family members and your donor. Siblings, half-siblings, children, parents, grandparents, aunts, uncles and cousins can quickly be identified through your DNA, and with slightly more research, even more distant family members can be found. Consider whether they are ok with you sharing this information about them.
DNA testing on behalf of your child
If you are the parent of a donor-conceived child, it can be very tempting to use DNA to find more information about your child’s origin or find others who were conceived using the same donor. But be sure to consider the ethical aspect of sharing information this sensitive on behalf of an underage child who has no way of consenting or realising potential risks.
Instead, look through the donor profile – it will answer a lot of your questions. If you for some reason don’t have access to it, contact your sperm bank.
Respecting the rights of the donor
It’s also important to respect the donor’s rights. If he is a No ID release donor, he has already indicated, that while he wanted to help you make your dreams of a family come true, he is not interested in sharing his identifying information.
An ID release donor has consented to the child receiving his information when they reach legal age – when they are old enough to decide what feels right for them.
If your child then wants to contact the donor, we are happy to help by reaching out to him and ask if he is willing to connect, and we offer support sessions for both the donor and donor-conceived person to help them have a positive experience.
Your DNA is extremely sensitive information
Your DNA is one of the most personal and sensitive forms of data you can share. It’s unique to you and holds information that not only identifies you but can reveal insights about your health, ancestry and familial relationships. It is crucial that this data is protected and doesn’t fall into the wrong hands.
Many commercial DNA databases are based outside the EU, where data security and privacy laws can be less stringent than in Europe. For example, the EU’s GDPR regulations provide robust protections for personal data, requiring explicit consent for sharing and allowing individuals to request deletion of their information. Outside EU, DNA data might not be as tightly protected, potentially making your genetic information more accessible to third parties.
It's essential to research the company’s data policies and understand how they handle, store and potentially share your genetic information before submitting your DNA.
The risk of data breaches
Even if you find their policies adequate, no digital database is 100% safe from cyber-attacks and data breaches. In recent years, there have been instances where large data breaches exposed sensitive personal data of millions of users. If a commercial DNA database is compromised, your genetic information could be leaked, misused or sold without your consent. This means your genetic information could be used in ways that you never intended, such as by insurers or employers.
Consider professional genetic counselling
Most commercial DNA companies offer not only to connect you to people with whom you are related but also to analyse your genes for potential health risks. You may find out whether you are at risk of developing cancer, Alzheimer’s, heart disease or other conditions. This can be very helpful, but also devastating information, and you may need additional genetic counselling to fully understand the result and what to do with that information.
So, should I do a DNA test?
After reading this, you may think that we advise against doing commercial DNA tests and seeking out genetic relatives. That is not the case. We know of donor-conceived families who have had happy outcomes of connecting with others who have used the same donor – but unfortunately, we have also had some less positive cases.
The key is to have realistic expectations, to be mindful with the information you receive and to respect the rights and wishes of everyone involved.