The more you know about your DNA, the more you know about yourself.
Our family legal system is built around inheritance rights. Yet it considers those rights only in monetary terms. Medical science is imploring us to rethink genetic inheritance rights as well. Reproductive technologies force us to consider if our genetic material is ours – solely – once it has been shared through natural reproduction or in a laboratory resulting in another life. If your genetic material, your DNA, becomes part of another human being, what right of privacy do you have, whether you raise the child or not? What rights do your offspring have to your DNA once it becomes his or hers? What responsibilities do biological parents have to the products of their DNA?
The Genetic Genealogical Chain of Life
Genetic and genealogy databases are growing every day, and will likely continue to gain in popularity as the costs of genetic sequencing tests drop. TV programs feature celebrities unlocking the secrets of their ancestors and fulfilling their natural curiosity. Ads for Ancestry.com, one of the most well-known genealogy websites, show how easy it is for novices to find their ancestors: Just enter a name and “a leaf pops up” connecting you to relatives.
For those who do not know their parentage, genealogy is more than a pastime, philosophical, or intellectual pursuit; it’s knowing where your talents, looks and traits come from, not to mention critical family medical history. But the growth of new search avenues reignites questions adoptees have long dealt with: Where do one’s right to know their roots, heritage, lineage – their truth – end, and another’s right to privacy or anonymity begin?
Genetic genealogy brings together two very different – and conflicting – perspectives on privacy. For geneticists, DNA is as personal as it gets: an individual’s unique code of life. Because of the possible repercussions in terms of employment and health insurance coverage, genetic data is subject to strict privacy regulations.
Genealogists – professional and amateur – on the other hand, thrive on sharing family trees, documents, photos and stories. Genealogists have, thus, long struggled to overcome the hurdles of sealed birth records for those who are adopted. Adoptees and genealogists are now using genetics to work around obstacles and unlock familial connectedness that adoption aborts, and herein is the dilemma.
Yaniv Erlich, a geneticist at the Whitehead Institute for Biomedical Research in Cambridge, Massachusetts notes that your DNA is not yours alone. “By putting your data out there [in online databases],” Erlich says, “you’re not only sacrificing your own privacy but also the privacy of people who are connected to you, because you share DNA.” In an article in Matter (which requires a subscription), Erlich notes the essence of the quandary: “The only way you can connect with people is with some loss of privacy,”
DNA testing websites such as 23andMe contain warnings that people might find unpleasant truths about their health or heritage. However, the company has no way of ensuring people read the warnings. The article in Matter describes a woman who, in trying to find her biological father, purchased two tests for herself and another dozen for people she asked to also be tested. Her half-brother refused to be tested out of concerns of having his DNA available to government agencies, but others for whom she purchased tests agreed and submitted saliva without any contact with the website or the terms of purchase, and perhaps did not consider the potential repercussions that can result when long-standing family secrets and lies are revealed. Shock, anger, feelings of betrayal, or exposure that can possibly cast shame, can unwittingly ensue when a searcher locates and contacts half siblings or cousins who may be adopted, descendants of “donor” insemination (DI), or children of rape, incest, or infidelity and men assumed to be fathers have their paternity suddenly cast into doubt.
Two Sides of the Same Coin: Right to know vs. privacy
Where is the ethical breech? Is it in revealing the truth or in concealing it to begin with? Does DNA testing create new problems or resolve the problem of unknown or intentionally anonymous heritage? Online databases have existed for many years to help DI children with a donor number find siblings conceived by the same donor. What is the difference between starting with a number or a DNA test result? How is it different when adoptees – and birth parents – compelled to find one another use the Internet and social media to publically reveal whatever details they know about the person they seek, exposing secrets for all to see, violating any expectations of anonymity or confidentiality they might have had?
Is it realistic for anyone to have an expectation of secret-keeping in today’s world of high-tech search tools and social media? Can anything – or anyone – remain a secret anymore? Does anyone have a right to expect that their secrets would or should be kept private? Do we as a society owe secret-keepers privacy or protection? Does the right to keep a secret override the need of those created through secret or intentionally anonymous means to know their genetic reality?
State laws vary in regard to the legal access of an adopted person’s original birth certificate. Beginning in the 1930s, states began sealing adoptees’ original birth certificates. The mores of the times ostracized single mothers and their “illegitimate” bastard children. Infertility, too, was shrouded in shame. Secretive adoption was intended to hide that sordid past and create a legal pretense that the child was the same “as if” born to the adopters. States still issue falsified birth certificates indicating the adoptive parents as parents “of birth.”
Historians trace the roots of sealed adoption records to baby brokers such as Georgia Tann who sold gray- and black-market babies to wealthy and influential people. Today, as it did then, quasi legal and unethical adoption practices work better in secrecy than with openness and transparency. That is why The National Council for Adoption (NCFA), lobbying for adoption agencies, adoption attorneys and facilitators, fights to maintain secrecy in adoption feigning concern for the privacy of birth mothers.
The statutes that sealed adoption records, however, state that the reason was to protect adoptive parents from possible intrusion by the birth mother or father. There was never any intent to protect the anonymity of the birth parent, and in the handful of states that have ended these discriminatory laws – as well as Alaska and Kansas where the records were never sealed – there have been no negative repercussions. No one ever sued for breach of confidentiality.
Elizabeth Samuels, (University of Baltimore School of Law, “Surrender and Subordination: Birth Mothers and Adoption Law Reform”, 20 Michigan Journal of Gender and Law 33, 2013) reviewed seventy-five documents for the relinquishment of parental rights – the legal process that takes place prior to adoption. The papers signed by those relinquishing parental rights contained no promises of anonymity. Adoption records are not sealed at the time of relinquishment, and not every relinquished child, or child taken by the state, is adopted. The records of those who remain in foster care or pass away without being adopted remain unsealed like all other birth certificates. Thus, no such promises could have possibly been made to relinquishing parents. The alleged “rights” of relinquishing parents is an unfounded, smoke screen created by the adoption industry to maintain secrecy and prevent transparency.
Despite the lack of promises, some perceive a “right” of privacy that may be violated as per this comment on a 23andMe community forum:
Obviously a lot of the adoptees have decided that their right to know trumps any other possible consideration. I do not, at present, agree with this,” posted someone named Taffe. “This risk—that relatives may be harmed in some way by the sharing of their DNA—has led some to argue that the decision to share is not an individual’s to make.
Taffe, suggests regulations be put in place to prevent such sharing. But how, and perhaps more importantly, why?
Adoptees like Shirley Chung have nothing but gratitude for 23andMe. When she received her results, she spent the day “crying tears of joy off and on all day.” Chung posted the following on Facebook:
…as an adopted child who has always been asked ‘what are you’ and not really knowing how to answer that question, I can now answer the question with certainty.
What most people take for granted in knowing their relatives and even being able to trace their ancestry even hundreds of years back, adopted people don’t have that. We feel disconnected from the world. Having children helps somewhat because then you have someone to call a blood relative. You can look into your child’s face and see your own. That is a beautiful feeling.
The results of my 23andme has helped me begin to fill a hole that I have always carried. I know some medical history now. I also have some possible 3rd – 5th cousins that I have contacted. Even if I never hear from any of them or if they wish to not meet me, I now know that I am connected by blood to someone in this big beautiful world of ours.
Genetic Inheritance: Patently More Complicated
This past June the U.S. Supreme Court ruled that individual genes were products of nature, not inventions, and thus could not be patented by companies. The case involved Myriad Genetics which had applied for a patent for a test they co-developed to determine particular mutations in DNA known as BRCA1 and BRCA2, which influence the risk of breast, ovarian and other cancers. The court ruled unanimously that modified DNA can be patented, but isolated human genes – which occur naturally – cannot. But the question remains: Are these genetic products of nature personal property?
Now, 23andMe – a privately held personal genomics and biotechnology company based in Mountain View, California – is involved in far more controversy than how personal DNA is, or the repercussions of matches based on test results. Do reproductive rights include the right to create designer babies?
Anne Wojcicki, co-founder of 23andMe, recently secured a patent applied for five years ago. U.S. Patent No. 8,543,339 titled “Gamete donor selection based on genetic calculations” includes genetic tests and computer programs to predict the likely traits of a baby based on the DNA of its parents. In other words it allows consumers to create designer babies using a “calculator” to pick and choose traits as you might customize a luxury car. 23andMe claims it does not intend to pursue or implement the patent for fertility clinics, but that hasn’t quelled concerns and criticism.
Dr. Marcy Darnovsky, executive director of the Center for Genetics and Society, described the project as “ethically and socially treacherous” stating: “It would be highly irresponsible for 23andMe or anyone else to offer a product or service based on this patent […] it amounts to shopping for designer donors in an effort to produce designer babies.”
“Selecting children in ways such as those patented by 23andMe is hugely ethically controversial,” bioethicists in Europe wrote in the journal, Genetics in Medicine. The Center for Genetics and Society, a bioethics think-tank based in Berkeley, Calif., has called on 23andMe “to abstain from developing or offering any product or service based on this patent, and to use its patent to prevent others from doing so.”
Marcy Darnovsky, the center’s executive director, said: “We believe the patent office made a serious mistake in allowing a patent that includes drop-down menus from which to choose a future child’s traits.”
Any such system,” she said, would be “ethically and socially treacherous…It could encourage the dangerous idea that science should be used to breed ‘better’ people, breathing new life into the specter of eugenics that has long hung over the field of genetics.”
Yet we do this now without a patent or a “calculator” when we allow the sale of anonymous eggs and sperm with preferences as to traits of the so-called “donors”. We continue to play Russian roulette with children’s lives in a (brave?) world that creates human products for paying customers, depriving these commodified beings access to their medical history and leaving them yearning for the most basic and tangible of human connection.
In all of us there is a hunger, marrow-deep, to know our heritage- to know who we are and where we have come from. Without this enriching knowledge, there is a hollow yearning. No matter what our attainments in life, there is still a vacuum, an emptiness, and the most disquieting loneliness.
— Alex Haley
It’s tragic when children are orphaned or abandoned and left with blank hereditary histories. How do we as a society justify practices that intentionally create orphans, designer babies, anonymous persons who will grow up faced with obstacles to the truth of their origins?
Adoptions – even step-parent adoptions – still seal original birth certificates and issue new false ones listing adopters as parents of birth and most states permanently deny the rights of adopted persons as they grow into adults citizens. Adoption rights advocates implore us to listen and learn from the pain and desperation of adoptees and DI children who are doing everything they can – including public postings – to find their truth.
Rape unfortunately occurs, and when offspring result from such tragedies they may never know half their genetic makeup. Adultery and infidelity will also occur as will one-time hook-ups. There will be times when women conceal or do not know the true identity of their child’s father. We cannot legislate truth in these circumstances. We can, however, regulate the rights, and perhaps more importantly the responsibilities, of those who buy and sell their genetic material anonymously to intentionally produce human beings without regard for the needs and rights of those beings.
While we debate when life begins, there is no question that once a child is born it has a right to protection and safe care. Does that right include full knowledge of one’s progenitors? Some suggest we need to revisit paradigms of child abuse to include the harm of intentionally keeping that vital information from one’s offspring.
It is time that we need to begin a dialog about reproductive rights – and responsibilities – that does not begin and end with the rights of mothers and fathers to procreate or not. We need to open discussions of this sort to the rights of the offspring and give a seat at that table to adult adoptees and DI children who live with the consequences of past and present choices and allowable practices. We need to perhaps focus less on protecting the rights of adults and more on the rights of these innocent beings brought into the world to satisfy others’ desires. And we need to discuss the ethics, morality and harm of the sale of anonymous human genetic material.