Megan Molteni covers biotechnology, medicine, and genetic privacy for WIRED.DHS officials say the pilot is just a small-scale evaluation to see if the technology can help root out cases of criminal fraud, including human trafficking and “child recycling.” Last month, former DHS Secretary Kirstjen Nielsen told a congressional committee that the agency had discovered multiple incidences of young people being passed around, or “recycled,” to help migrants gain illegal entry.
The sperm bank had requested some basics: height, weight, eye color, race, religion, education. The health portion of the application comprised half a page: blood type, cause of immediate family members’ death, a checklist of about a dozen medical conditions, including one simply labeled “mental disorders.” He checked a couple lines next to hay fever and nonspecified eye disorders. He didn’t provide verification; they didn’t ask. It was all anonymous. He could slip out as invisibly as he entered, and no one would know he was there.
Having made his donation, Johnson headed back to work. On the way, he stopped into the fancy French bakery around the corner to buy a pastry before descending into the subway station. He savored the rich indulgence, his reward for a job well done. He didn’t know it at the time, but his donation—like hundreds of others collected by Idant—would be sent to a clinic in Michigan.Three years later, British biochemist Frederick Sanger developed a groundbreaking method for rapid DNA sequencing. Fifteen years would elapse before the world wide web was born, and another 14 before scientists finished mapping the human genome. The notion that geneticists would learn to decode our unique genetic fingerprints, that companies would make that information accessible to millions, that vast digital networks of global interconnectivity would render the idea of anonymity quaint—all that defied imagination in 1974.
But technology has a way of creating new consequences for old decisions. Today, some 30 million people have taken consumer DNA tests, a threshold experts have called a tipping point. People conceived through donor insemination are matching with half-siblings, tracking down their donors, forming networks and advocacy organizations. As their numbers grow, more and more of them are banding together to demand regulation of a fertility industry they say has long overlooked their concerns.In November, Australian health professor Sonia Allan and Belgian advocate Stephanie Raeymaekers led the first delegation of donor conceived people to Geneva to mark the 30th anniversary of the UN Convention on the Rights of the Child, an international human rights treaty ratified by all member states except the US. Nearly 20 speakers sat two rows deep behind a king-size wood slatted conference table in a honey-toned meeting room and took turns addressing the convention. Betty Wright talked about feeling “wrong” because she never saw her idiosyncrasies reflected in her family. Damian Adams donned a Phantom of the Opera-esque demi-mask to illustrate the mystery half of his identity. Joey Hoofdman spoke of his 75 half-siblings, too many to bond with. Hayley Wilson described her siblings’ refusal to date without asking partners to take a DNA test to make sure they weren’t related. Joanna Rose told the story of her friend Narelle, who died in 2013 after learning too late about her genetic predisposition to bowel cancer.
“For professionals like these it typically costs the company between 1 to 1.5 times their annual salary to be able to replace that person and train a new person.” At that point, she argues it is far more cost-effective for companies to pay for policies that would support these families, things like paid family leave, flexible work hours, and subsidized child care.