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In the last decade, the drive to understand who we are and where we’ve come from has been accelerated by DNA testing.

So far, around 40 million people worldwide have used direct-to-consumer genetic testing (DTC-GT) kits to learn more about their family history and cultural identity.

These kits are also often given as gifts, but many users are unprepared for the emotional toll of discovering the identities of unexpected parents, children and other relatives, let alone for the response they may receive if they make contact.

DNA testing comes with benefits, risks and limitations

The impact of these issues is especially profound for people who have experienced domestic or international adoption or been placed in an Out-Of-Home Care (OOHC), such as foster care, kinship care, permanent care or institutional care.

Because care records may be sparse, DNA testing with all of its benefits, risks and limitations is sometimes the only available route to understanding more about their family tree.

With funding from the Melbourne Social Equity Institute, our team of researchers worked with three community organizations to understand the needs of Australians from adoption or OOHC communities who use this technology.

This study, published in Adoption & Fostering, was the first of its kind in Australia and involved community groups VANISH, Open Place and ARMS (Victoria).

We conducted two surveys—one for consumers and another for service providers—and canvassed the opinions of those with an adoption or OOHC experience in Victoria.

The project also analyzed the terms and conditions of DTC databases and platforms to determine whether they were appropriate for people searching for family after experiencing adoption or out-of-home care.

We found that the outcomes and impacts for consumers of using this technology were often a double-edged sword.

Like opening Pandora’s box, DTC-GT can bring both joy and turmoil. Some of the responses included:

• "I found people I looked like, and sounded like me."
• "For me, it gave me the factual answers, but it doesn’t help or have you ready for the emotions I went through."
• "I’ve been dealing with a whole range of emotions—anger, rejection, grief. I didn’t realize how upset I’d be after getting my DNA results."

Calls for better guidance and support

Consumers also reported that the digital DNA marketplace was like navigating an ethical minefield of data ownership and privacy in the age of genetic information.

DNA companies’ terms of service are complex, long, legalistic and sometimes unclear. Many people don’t realize that when you tick a box to indicate your acceptance of "terms of service," "terms and conditions" and "privacy policies," you are entering into a legal contract.

The ownership of DNA samples and data also remains a problematic topic in Australian law.

Even though many people use DNA testing to find family after adoption or OOHC, the DNA companies almost never consider the needs of these people specifically. The same terms and conditions apply to people, whether they are testing for "fun" or searching for a parent.

While many companies providing DNA testing and genetic genealogy websites advise that people might receive unexpected results and unanticipated contact from relatives, they take no responsibility for the consequences and do not help people access support.

Best practice would suggest that there should be clearer information for people with an adoption or out-of-home care experience.

This can include exposure of long-held secrets, tensions around who has the ’right to know," interpretations of health results and the potential strain on all parties.

There are calls for better guidance and support services for those embarking on this DNA journey, and for stronger oversight in the wild west of commercial DNA testing.

Some companies offer stronger privacy protections than others, saying they won’t ever sell your data. But it’s important to weigh up the risks and benefits of different platforms—including cost, the size of the "family tree" database and privacy protections.

There are concerns about how companies store, share, and use genetic data, including selling it to third parties (like pharmaceutical companies and health insurers) or providing access to law enforcement, which may occur without explicit or fully understood consent.

Most companies allow you to set preferences to restrict your visibility and the possibility of others contacting you, but if you are concerned about privacy, consider using an email address or username that doesn’t reveal your real name and use a web browser on a "Private" or "Incognito" setting.

Users should consider how they might both protect and share their personal information to suit their needs.

New resource for people undertaking consumer DNA testing

It is important to note that the situation in Victoria is set to become even more complex.

A recent amendment to the Victorian Adoption Act 1984**, allows birth relatives to access identifying information about an adopted person, without the adopted person’s consent.

This has the potential not only to increase the volume of applications to record-holder organizations but also to increase the desire for faster information through DTC-GT use.

Our study and the accompanying resource Making informed choices about using DNA aims to bridge the gap between research and practice, providing a roadmap for navigating the search for information and family in the digital age.

The guide is designed to support people who are using DTC-GTs, as well as policymakers, social workers and anyone touched by adoption or out-of-home care.

Our team’s next steps will be to expand the study to support people who embark on their DNA journey outside of Victoria.

One survey participant told us:

"Because I have no information, and I was born in Vietnam but adopted via the Victorian adoption process, DNA is my best option."

You don’t have to go it alone

The International Society of Genetic Genealogy, "highly recommends that adoptees, orphans, donor-conceived individuals and others with sensitive matters work with experienced search organizations prior to making contact with biological families."

There are organizations that can help people with an adoption and/or OOHC experience through the process of DNA testing to find family (details below).

Support services can talk to you about your concerns and provide advice.

Their staff may have experience interpreting DNA test results and contacting matches. Some organizations provide funding or subsidies to help cover the cost of DNA testing.

Even if you decide to begin the DNA testing journey by yourself, you can always seek support later if you need it.

The resource, Making informed choices about using DNA, can be accessed here.

More information: Jeanette (Jenny) Conrick et al, The use and impacts of direct-to-consumer genetic testing for adults with an adoption or out-of-home care experience: A scoping review, Adoption & Fostering (2025). DOI: 10.1177/03085759251338318

This article was first published on Pursuit. Read the original article here.

Citation: Getting support for opening the ‘Pandora’s box’ of DNA testing (2025, December 22) retrieved 22 December 2025 from https://phys.org/news/2025-12-pandora-dna.html

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