DNA Test Kits in a Digital World: Social Work’s Role
Widespread availability of DNA tests kits presents an array of issues for professional social workers who focus on clients’ interpersonal relations, family dynamics, identity formation, and their commitment to social policy and ethical practices.
“Flash Sale! Two days only! 50% off! Celebrate Life, Liberty, and the Pursuit of Your Story!” shouts the e-mail ad that pops uninvited into your inbox over the July 4th weekend. It’s from a company that solicits potential customers curious to learn more about their genetic origins and find out to whom they may be related. All you need do is pay online by credit card, then wait for a small test tube to arrive by mail, spit into it, send it back, and wait. The company then examines the DNA in your saliva and four to six weeks later e-mails you a report indicating from which regions of the world your genetic ancestors originated. If you choose to do so, you may also learn who your genetic relatives are.
While this sounds simple and straightforward, it can also be complex in unanticipated ways. On the one hand, learning more about one’s genetic and ethnic roots can enhance a person’s sense of identity and connection and build supportive, nurturing networks of relatives. On the other hand, it can open a Pandora’s box of unanticipated blindsiding intrapsychic and interpersonal issues for which individuals may be unprepared. While there may be privacy protections in place with direct-to-consumer DNA test kits, the vast interconnected digital world makes guarantees of confidentiality and privacy vulnerable to breaches with one errant, or purposeful, click of a mouse.
People communicate via e-mail, text message, Snapchat, Instagram, Facebook, blogs, chat rooms, Twitter, and other digital media, sometimes reaching millions of people with a single message. Each of those millions can spread the message to others. Without sophisticated encryption, the privacy of any message conveyed digitally can hardly be ensured. Consider the panoply of recent revelations of privacy breaches; Business Insider reports that, between January 2017 and April 2018, 16 major retailers were hacked and experienced privacy breaches.
All of this is highly relevant to the social work profession, given its focus on social policy, human development, identity formation, family dynamics, interpersonal relations, and ethical practices. The world of DNA test kits and digital media is important to the social work profession, which has a long history of involvement in the areas of adoption, surrogacy, gamete donation, and infertility. Social work’s history in these arenas has taught the profession about the impacts of secrets and cut-offs in human relationships and the importance of self-awareness, self-reflection, honesty, trust, transparency, and mutual respect in navigating differences among people who have conflicting needs, beliefs, and cultural practices.
DNA Test Kit Privacy and Accuracy
While companies have privacy practices in place, according to Helen Wallace (2018), “When you send your DNA to an ancestry testing company, they might not be the only ones looking at it.” DNA testing companies’ privacy policies vary, and few consumers read the fine print. She points out that when a person’s genetic information is stored in a database along with personal details, anyone with access to the database can identify that person via DNA collected from a used coffee cup or piece of chewing gum, and anyone who can track down a person can also find that person’s other relatives. Even if a person is not in a DNA database, that person can be tracked down via a relative whose DNA is in the database. The test kit company may share one’s personal information with law enforcement if the company believes it is necessary to comply with valid legal processes, such as subpoenas or warrants.
There also appears to be racial imbalance in the DNA testing industry at present (Holger, 2018), as nearly four-fifths of people who have used DNA test kits are U.S. citizens, mostly of European origin. Africa and Asia’s still developing electronic infrastructures make DNA testing less accessible on those continents.
In 2018, The New York Times reported that Donald Cline, MD, while working in an Indiana fertility clinic, used his own sperm to impregnate patients. Several of those offspring, using 23andMe, have discovered more than three dozen half-siblings. It remains unknown how many patients Cline inseminated with his own sperm. In December 2017, he pled guilty to two felony obstruction of justice charges, was given a suspended sentence, and surrendered his medical license. Matt White, one of the half-siblings whose DNA information linked him to Cline, said, “It plays mind games with you”; he wonders whether how he was conceived has had any impact on his personality.
BBC News in April 2019 reported that Dutch fertility doctor Jan Karbaat, without his patients’ knowledge or consent, used his own sperm to father 49 children. NBC News in June 2019 reported that Canadian infertility physician Norman Barwin, via DNA testing, was accused of inseminating at least 11 patients with his own sperm and giving incorrect sperm to 50 to 100 patients. There can be significant health-related consequences; when people do not know their genetic heritage, it is impossible to know to which genetic conditions and diseases they may be susceptible.
In her 2019 book, Inheritance: A Memoir of Genealogy, Paternity and Love, Dani Shapiro writes about her experience with a DNA test kit. Without forethought, one night she spits into a test tube her husband has purchased. When the results arrive, by comparing her DNA with her half-sister’s, Shapiro learns that the father who raised her is not her biological father. On the internet, she easily identifies her genetic parent.
But other difficult mysteries remain. Shapiro becomes preoccupied by questions: How will I find my biological father? What if he does not want to be found or wants nothing to do with me? What if I do find him and he wants to have a relationship with me? How could the people I trust deceive and betray me like this? How do I contact my biological father without frightening him off? How do I explain all this to my own child? What does it mean that my life has been a secret until now? How do I understand my connections to the family who raised me and kept this secret from me? Why was all this kept from me? How do I reauthor my life thus far? How do I handle the emerging complicated relationships with my newfound biological family, and their tentative approach towards me?
DNA test results can also bring other emotional consequences and trauma. Consider a married couple experiencing infertility who are treated at a clinic where they are told that the husband’s sperm will be used to fertilize the wife’s egg in a petri dish, and that the resulting embryo will be implanted into the wife’s uterus. Unbeknownst to the couple or anyone else, the physician performing the procedure mixes the husband’s sperm with the sperm of other men, in the hope that this increases the chances of a hardy sperm successfully fertilizing the egg. The sperm donors are anonymous, and even the number of donors is not tracked. The child thus conceived—and the parents who raise him—have no idea that the nurturing father might not be the genetic parent. One year, for a holiday gift, the parents give each other and the child DNA test kits, to help their daughter develop her interest in genealogy. All are stunned to learn that the child’s DNA in no way matches the father’s. They feel misled, betrayed, bewildered, and violated, and wonder whom they can trust. The daughter starts to wonder whether she is a misfit with her father because she is not related genetically to him.
In another scenario, a woman impregnated in a clandestine one-night stand raises her son to adulthood, and the son and husband believe that the husband is the son’s father. A DNA test kit shows otherwise.
Locating genetic relatives after DNA testing, a woman discovers that she may carry a gene for a devastating disease. She would rather not have known this, as the information plagues her with anxiety.
An adoptee, who always knew that her parents adopted her, uses DNA testing to obtain genetic knowledge about herself. She reaches out to newfound genetic relatives, only to learn that her original parents by birth made the adoption plan in secret, and no genetic relatives have any idea that she exists. Her DNA search opens the secret, causing havoc throughout the genetic family of origin who are angry at her for opening this can of worms in their lives.
Once a secret is exposed via digital communication, it can easily go viral. E-mails and text messages get forwarded, comments and notices get posted on Facebook, Twitter, and so on. Suddenly, an emotionally laden, painfully private bit of information is broadcast to others who have a personal or voyeuristic interest in the story. This adds layers of complexity on the people thus exposed. The messages and comments they then digitally receive may not all be supportive; they may be hurtful, condemning, dismissive, cruel. People’s issues can thus collide in a tangle that taxes even the hardiest, wisest, most mature person’s coping skills. When children or adults with other challenges in their lives are pulled into the mix, people get hurt.
The ripples of unanticipated disclosures across individuals and families are extensive, crossing the globe. One person, for instance, who was raised to believe that all of her genetic relatives had been murdered in the Holocaust, learned through DNA testing that she has 2,000 cousins. At first delighted, she later was deluged with relatives—more than she can handle—seeking connection.
Social Work’s Role
The NASW Code of Ethics lays out principles and standards regarding truth telling, fraud, and deception; boundaries; privacy and confidentiality; informed consent; and self-determination, autonomy, and paternalism. In addition, there are well-established principles in the social work literature to guide adoption policy and practice that are immediately relevant to helping people anticipate and manage explosive issues raised by the proliferation of direct-to-consumer DNA test kits and the revelations they may produce.
In the world of adoption, social workers have experienced the consequences of secrets and cut-offs within and among families. They may be familiar with the dynamics among original parent, adoptive parent, and adoptee, and how those dynamics involve agencies, lawyers, friends, neighbors, and others whose lives are touched by each adoption. Informed by decades of missteps managing all of this, social workers as human relations specialists may be in a position to help people navigate the minefields today’s DNA test kits and digital media may spawn. Clinicians may be able to help people learn and practice skills for problem solving, communicating about difficult issues, setting respectful and compassionate boundaries among family members, asserting oneself constructively, regulating one’s emotions, and accepting and managing one’s own and others’ distress.
A child is the most vulnerable and voiceless participant in a family constellation, so it is the child’s well-being that should take precedence and be protected. Hence, in a world where promises about keeping one’s genetic heritage a secret cannot be assured, it is best to share with one’s child all known genetic information in age-appropriate words throughout a child’s development. This means that all children who are adopted, born by egg or sperm donation, or carried by a surrogate should know their own story from a young age. Skilled, informed social workers can help clients practice how to tell truthful stories about difficult material, delivered in honest, nonjudgmental, compassionate terms. Similarly, in a digital world in which any electronically communicated information can spread virally, social workers can help people think carefully before sharing any personal information digitally. This involves helping people articulate in advance of using a DNA test kit what their hopes and anxieties might be and how to make considered choices before they make the leap into the DNA testing universe. Parents need to know that a child’s personal, private information belongs to the child and is not the parents’ to disseminate publicly.
Informing and influencing public policy and education are also key roles in social work. Disseminating information about the challenges that can emerge when using a direct-to-consumer DNA test is important. Social workers can advise people to read carefully the small print that may accompany e-mailed ads they receive for direct-to-consumer DNA test kits regarding possible challenges that exploring one’s DNA can generate.
In the digital world, new issues and challenges are likely to continue to emerge as technology evolves. Social workers are wise to stay abreast of the changes, pursuing continuing education so they are well equipped to consult constructively with clients and public policy makers.
— Deborah H. Siegel, PhD, LICSW, DCSW, ACSW, is a professor at the School of Social Work at Rhode Island College in Providence.
Holger, D. (2018, December 4). DNA testing for ancestry is more detailed for white people. Here’s why, and how it’s changing. Retrieved from https://www.pcworld.com/article/3323366/dna-testing-for-ancestry-white-people.html.
Wallace, H. (2018). Ancestry DNA testing: Who could track you and your relatives? Gene Watch, 31(1), 9-10.