Technocreep (16 page)

Why is the FDA so reluctant to let you see your own genetic data? Information like this used to come through a medical professional, presented with suitable interpretation and caveats. The FDA is clearly concerned that some people may base important medical decisions on such tests results, which are presented without the intermediation of a medical professional.
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The company is looking forward to the day when they can resume this line of business. On their website, 23andMe notes that “In the future, you may be able to receive health-related results, dependent upon FDA marketing authorization.”

Lots of smart, tech-savvy young people are using direct-to-consumer testing to investigate their genetic makeup, often before starting a family. They treat the results as useful information, but not as a definite roadmap of their medical future.

The smartest ones do the test under an assumed name and pay for the results in some anonymous fashion. However, even that precaution may not be enough. Technology expert Brian Lynch explains that “people can tag me as a sibling or cousin, and then share THEIR results to others, so they're in effect sharing some of ‘me' to the public.”
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Even with the U.S. Genetic Information Privacy Act in force, letting anybody have your DNA linked to your real identity is like handing them the keys to your body, as well as information about all your close relatives.

In 2005, IBM announced that they would take a leadership role in promoting the cause of genetic privacy. The tech giant pledged not to use the genetic information of employees or prospective employees in making decisions about them. Then-IBM president Sam Palmisano explained the logic behind this policy: “It has been IBM's long-standing policy not to discriminate against people because of their heritage or who they are. A person's genetic makeup may be the most fundamental expression of both.”
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While 23andMe gives a some assurances in its privacy policy, they specifically reserve the right to disclose, to third parties of their choosing, your “Genetic and Self-Reported Information that has been stripped of Registration Information and combined with data from a number of other users sufficient to minimize the possibility of exposing individual-level information while still providing scientific evidence.”

Even in anonymized form, this data will be gold to pharmaceutical companies who may use it for research, but may also be put it to less noble uses. Genetic testing companies are subject to court orders to disclose information, hacker attacks, physical break-ins, and the misuse of information by their own employees.

Unlike a credit card that you can cut up to get a new number, or even fingerprints that you might burn off, you are not going to change your DNA in this lifetime. Sometime in the future, someone may create a de-anonymizing system that could pick you out of a genetic crowd, even with technical safeguards in place.

If there are only a small number of people with certain traits, and governments keep building giant DNA databases, then they have the tools and incentive to round up people who fit a certain profile to question them in the event of a crime committed by a person with this same profile.

It may or may not make you feel better to know that Google, a company whose modest mission is to “organize the world's information and make it universally accessible and useful,” has invested millions in 23andMe. In addition, Google's co-founder Sergey Brin and 23andMe's co-founder Anne Wojcicki have had two children together.

23andme is not without competition. In New York City, Jared Rosenthal is the owner of a mobile DNA testing truck, actually a re-purposed recreational vehicle. He calls it a “24/7 drug testing, breathalyzer, and DNA testing operation.”

Rosenthal told
Bloomberg Businessweek
that he started this ­business in an RV because he “couldn't afford to lease an office” but he now sees the virtue of a lab that invites the public to come in for answers to burning questions like “Who's Your Daddy?” for a fee of $299, or $349 if you might need to use the results in court.

On his company's website, Rosenthal writes that “We conduct hundreds of these tests each year—and we've had plenty of ‘you are not related' moments.” He also reports using genetic testing to connect a woman with her long-lost daughter, who she had been told died in infancy. He even tested a “married couple who discovered they shared—of all things—the same father.” Tales like this cry out for a reality TV show, and, Rosenthal reports on his site, one is in the works.

I was told a fascinating story by a transplant surgeon at a major North American hospital. A man who needed a kidney transplant brought his twentysomething daughter with him to the hospital. When tested for compatibility, it was clear that she was not genetically his daughter. The hospital convened its ethics board which decided the doctors should tell the man, and give him the chance to break the news to his daughter.

He declined, so they informed her and she stormed out. A week later she was back, having re-considered the situation. “I'm going ahead with the operation, she said, ‘but I'm so glad that I know the truth. If I had found out later I would have felt somehow cheated.”

The chances are good that when the young lady was born, her heel was pricked with a needle for a blood sample. Since the 1960s, this procedure has been routine, and even legally mandated, to test for a number of inborn errors of metabolism. The justification for Newborn Blood Screening (NBS) is that with the right kinds of treatments, serious diseases like phenylketonuria can be detected right after birth and managed, averting tragic medical problems.

Typically some of this blood is also put on filter paper, dried, and filed away. These samples are an excellent source of DNA. In fact, newborn screening may actually be the Holy Grail that many ­governments have been lusting after—a national DNA database of all of its citizens.

Now that people are realizing this hidden source of DNA already exists, Americans are doing what Americans do when they're upset—filing lawsuits. According to an article in
Pediatrics
, “Within the last five years, two states, Texas and Minnesota, have been sued by parents because of the retention of residual bloodspots without parental permission. Texas, in a negotiated settlement with plaintiffs, agreed to destroy ~five million retained specimens in 2010.”
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We all want the benefits that come from genetics research, but we are skittish about having our own, or our children's, genetic data filed away somewhere. Knowing how it can be misused today, and extrapolating to future technologies, justifies our intuitive anxiety.

A survey of Canadians showed “strong support for storage of NBS samples for quality control, confirmatory diagnosis, and future anonymous research.”
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However, many of those surveyed also expressed discomfort. Some expressed lack of faith in the health system's security procedures. One noted that there was a powerful incentive for misuse and that “One of the corporations is going to pay for all these blood samples … And they might be using it for different purposes.” Another reported objection was that, in the future, “someone can request and through a court get a court order to go and get this genetic material that belongs to your baby. That I find I'm a little more nervous about.”

Lending credence to these fears is the trend towards opening up adoption records. Many birth parents entered into blind adoption believing that the records would be sealed forever. Now organizations like the Adoptee Rights Coalition are fighting to give adopted persons the right to obtain their original birth certificates. DNA can provide the perfect key to unlocking things that people thought would be kept secret forever. Just ask sperm donors who are now starting to hear from their “anonymous” offspring.

The technology for producing the semen sample really has not changed much over the years. Small room, locked door, sample container, pawed-over magazines. Nor has the compensation, which one California sperm bank lists as “$100 per donation, up to $1200 per month.” What has changed greatly is the screening process for prospective donors. It now includes family history, medical records, blood type, childhood photos, pets, your philosophy for achieving World Peace—basically everything a Miss America contestant would need to disclose, all organized and indexed in an online database.

The website of Fairfax Cryobank in Fairfax, Virginia shows prices from $250 to $735 per dose, depending on, among other things, the educational attainment of the donor. Like any good retailer, they have an elite “Club Fairfax” that allows prospective mommies first crack at new sperm donors plus a “buy five vials and receive the 6th free” offer. There are no (publicized) auctions of donor sperm, though there certainly is a resale market. Sperm banks trade and sell semen to each other. This is a good thing, because you would not want all the kids in the same geographical area to be genetically related. The risk of accidental incest a few decades later is just too great.

This sperm bank makes selecting the father of your child a lot like ordering a pizza. You choose Donor Ancestry (Any, Asian, Black, Caucasian, Latino, Multi), Eye Color, and Hair Color. You can even upload a picture of someone you would like the father to resemble to help find the Dream Daddy of your not-yet-conceived offspring.

To test how well their matching algorithm performs, I uploaded a publicity photo of Brad Pitt (since the Internet assures us he is the “Sexiest Man Alive”) and the Fairfax Cryobank system helpfully churned out two HIGH matched donors and five MEDIUM matches. Specifying that the sperm donor should also be Black produced only LOW matches, increasing my faith that this rather opaque matching system is doing some actual processing. We ultimately have to take the system's word for the quality of the matches since the majority of sperm donors choose to be anonymous. At least they think they are.

Consider the case of Donor 401 at Fairfax Cryobank. A 240 pound, 6'4” man of German ethnicity, his hobbies included football, hockey, and, apparently, sperm donation. The website
donorsiblingregistry.com
currently lists 17 of his progeny, but there are believed to be many more out there. He even has eleven women in his fan club—all mothers of children he sired by artificial insemination. While he retired from active sperm donation in 2004, some vials of his sperm were laid away in storage. Ah, but do VIP sperm samples appreciate in value like a 1787 Château Lafite Rothschild? Actually, they can become priceless in a creepy sort of way.

There is apparently a waiting list for any available vials of seed from Donor 401 at the Fairfax Cryobank. In 2006, a California artist named Melissa Weiss realized she was sitting on a supply of seventeen vials that had cost her $175 each. Since she was no longer trying to conceive with donor sperm, she decided to do a very good deed. Journalist Phillip Sherwell, writing in
The Telegraph,
explains: “She insisted on giving them to existing ‘401 mums' who wanted more children by the same donor father. There seems little doubt that, had she chosen, she could have sold the samples for many times the purchase price.”
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Nobody is really sure what the record is for number of children sired by the same sperm donor. But a report in the
New York Times
discusses a woman who started a kind of online playmate group for her son who was conceived through donor sperm. The membership roster is now up to 150 half-siblings and some of them go on vacations together.

“It's wild when we see them together,” she's quoted as saying. “They all look alike.”
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According to Barnard College President Debora Spar, author of
The Baby Business: How Money, Science and Politics Drive the Commerce of Conception
: “We have more rules that go into place when you buy a used car than when you buy sperm.”
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Spar would probably be even more horrified by the totally unregulated sperm donor matchmaking that happens on social media sites including Facebook. Just search for “Sperm Donor” and you will find frantic posts like this one “Are there any donors in the New York, New Jersey, or Pennsylvania area. Will be ovulating in ten days.”

So far, the famous Donor 401 has managed to maintain his anonymity. Will he ever be on the hook for college and wedding expenses for his global brood? Never say never. Beside a photo with the caption “Ready for a phone call in fifteen years?”
New Scientist
ran a fascinating story of a fifteen-year-old boy who tracked down his sperm donor father with a cheek swab and some detective work. He did this despite the fact that his father had never contributed DNA to
FamilyTreeDNA.com
, the genetic testing site that the boy used to test his own DNA.

As Alison Motluk writes, “the teenager tracked down his father from his Y chromosome. The Y is passed from father to son virtually unchanged, like a surname. So the pattern of gene variants it carries can help identify which paternal line an individual has descended from and can also be linked to a man's surname.”
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Eventually he found two men with DNA that closely matched his own. They had the same surname, and he was able to use this clue, plus other known information such as the sperm donor's place of birth and college degree, to find his biological father.

As we see from the change in sperm donation secrecy over just a few decades, yesterday's ironclad secrets have become today's open information.

What will happen to today's secrets as technology moves forward?

In 1998, a British professor named Kevin Warwick made history by becoming the first human to have an RFID chip surgically implanted into his body.

Warwick was the first “chipped human” for a period of time, until businesses saw the potential of this kind of body alteration. In 2004, a beach club in Barcelona started to implant chips the size of a grain of rice into their VIP customers. These RFID chips provided access to restricted areas and also served as identification when buying drinks, allowing customers to wear skimpy attire without needing pockets for ID or credit cards. The chip emits a unique ten digit number and, according to BBC producer Simon Morton, the implantation is painless.
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