Genetic Crossroads

Genes and Jobs

Pete Shanks — Tue, 17 Nov 2009 20:49:36 +0000

The Genetic Non-Discrimination Act (GINA) comes into full effect this Saturday, November 21st. Employers need to take note, and employees should be aware of their rights.

Congress passed GINA almost unanimously, and President Bush signed it on May 21, 2008. Described by the late Senator Ted Kennedy as "the first civil rights bill of the new century of the life sciences," GINA protects individuals from genetic information discrimination in health insurance and employment. A detailed description can be found here.

Even some well-informed commentators seem to have missed this landmark piece of legislation. So have some employers. The University of Akron (UA), for example, adopted a policy as recently as August that could require any candidate for employment to submit a DNA sample:

"Applicants will be asked to submit fingerprints and at the discretion of The University of Akron may be asked to submit a DNA sample for the purpose of a federal criminal background check."

In late October, alerted by a concerned employee, a CBS blog wrote about the case at length, and from there it made it to Andrew Sullivan's Daily Dish, Inside Higher Ed and even Nature, among others. Clearly the idea of employers testing for DNA hit a nerve, and that's part of what GINA addresses:

"It shall be an unlawful employment practice for an employer to request, require, or purchase genetic information with respect to an employee ..."

UA, however, seemed to think that GINA only applies to health insurers. Much of the legislation does focus on that, but the language is unequivocal, as Jeremy Gruber of the Council of Responsible Genetics stressed:

"It does not draw a distinction about how the DNA sample could be or should be used. There is no exception under GINA for employers in this context at all."

Regrettably, UA's first reaction was defensive:

"The only reason the university has included this in the criminal background check policy is because the university feels that in the future, that's the way technology is going. The university wants to be on the beating edge. It wants to be prepared."

Also:

"Nobody has to submit to [a background check]; you're always free to try to find other employment."

Fortunately, UA has rethought its language. Revised guidelines, expected to be approved on Friday, read:

"The candidate may be required by the law enforcement agency to provide additional information which is needed by the law enforcement agency for the purposes of conducting the criminal background check."

In a sense, that's passing the buck: The controversy over criminal DNA databases is heating up. But at least it brings UA in compliance with GINA.

Public policy on genetic privacy is just beginning to be defined legally, with appropriate limits. Civil rights activists, libertarians, and many others of all political persuasions are expressing concern about possible abuse of DNA data.

Some of these abuses have already happened. Back in 2000, for example, the Burlington Northern and Santa Fe Railway Company took DNA samples from employees without their permission; they wanted to screen out people who might develop carpal-tunnel syndrome. A lawsuit was settled for $2.2 million, though the company denies having broken the law as it then was.

In addition to privacy concerns, the value of genetic tests is a major issue. "The preponderance of carpal-tunnel symptoms actually does not have a genetic basis," commented one expert. In virtually every case, tests offer at best an indication that an individual might be at somewhat higher, or lower, risk for a particular disease. This can be useful information, medically, but it's a long way from predicting with certainty how a person's life will develop.

Meanwhile, the Federal government has taken a significant step in the direction of curbing abuse. That's a good start.

Delivering a Baby: Commercial Surrogacy in India

Marcy Darnovsky, Ph.D. — Thu, 29 Oct 2009 20:45:55 +0000

What's it like to grow a baby in your body for nine months, feel it start to move and kick, give birth, and watch as the newborn is whisked away to the waiting arms of its...mother?

Media descriptions of commercial surrogacy (1, 2, 3, 4) tend to focus far more on the lives and feelings of the "contracting parents" than on those of the surrogates. Typically the stories discuss the despair associated with infertility, the hopes aroused by the prospect of a genetically related child, the anxieties of "outsourcing" the gestation of the child, and the joys of "taking delivery" of the baby. The surrogates usually figure briefly and say little. This is especially true when they are poor women recruited from rural villages, as is most of the "work force" in what has become a half-billion dollar per year industry in India alone. Many of the clients are from Europe and North America.

Two recent accounts do much better at portraying Indian surrogates as real people and letting them speak about their experiences. In the current issue of The American Prospect, UC Berkeley sociologist Arlie Hochschild recounts a round of interviews with commercial surrogates and surrogacy brokers in Gujarat, India. Her article, titled "Childbirth at the Global Crossroads," focuses on the concept of "emotional labor," which she introduced in her 1983 book The Managed Heart: Commercialization of Human Feeling. Surrogates, she says, have something in common with nannies and nurses. Like them,

surrogates perform "emotional labor" to suppress feelings that could interfere with doing their job....As science and global capitalism gallop forward, they kick up difficult questions about emotional attachment.

The fertility clinic in Gujarat requires surrogates to live in a dormitory, nine to a room, during their entire pregnancies. They must get permission to leave or to see their husbands or children. They often deliver by Caesarean section, perhaps in order to allow the contracting parents to schedule their travels to India.

Dr. Nayna Patel, the clinic director and a pioneer of India's "reproductive tourism" sector, says that contract pregnancy benefits everyone, surrogates included. Indeed, many women who serve as surrogates make as much money for one pregnancy as they can for several years' work. Hochschild acknowledges that her work "has a touch of Mother Teresa" about it. Yet it also seems "coldly efficient." Dr. Patel advises surrogates no to have much contact with the people who will raise the children they have gestated.

Staying detached from the genetic parents, she says, helps surrogate mothers give up their babies and get on with their lives - and maybe with the next surrogacy. This ideal of the de-personalized pregnancy is eerily reminiscent of Aldous Huxley's 1932 dystopian novel Brave New World, in which babies are emotionlessly mass-produced in the Central London Hatchery.

Hochschild asks one surrogate about her decision to carry a baby for pay.

"It was my husband's idea," Geeta replies. "He makes pav bhaji [a vegetable dish] during the day and serves food in the evening [at a street-side fast-food shop]. He heard about surrogacy from a customer at his shop, a Muslim like us. The man told my husband, 'It's a good thing to do,' and then I came to madam [Dr. Patel] and offered to try. We can't live on my husband's earnings, and we had no hope of educating our daughters."

Geeta tells Hochschild how she keeps herself "from getting too attached" to the baby she's gestating: "Whenever I start to think about the baby inside me, I turn my attention to my own daughter. Here she is." She bounces the child on her lap. "That way, I manage."

A recent Israeli documentary called Google Baby also focuses on the experience of Indian surrogates. In fact, its trailer offers an excruciatingly up-close look.
The clip opens with a woman lying draped in surgical gowns. The sounds of flesh being sliced are followed by an infant's first cries. The doctor presiding over the procedure asks the woman from whom she's just removed the baby why she is crying, and then immediately takes a cell phone call to make a pitch for another surrogacy arrangement. Moments later, the surrogate weeps as she is given a quick look at the baby. She's permitted a single caress of the baby's face before it is carried off.

According to a reviewer's summary of the film, Google Baby also depicts an Israeli entrepreneur who has taken the globalization of baby-making to new levels; he observes that "outsourcing to India is very trendy right now." His business model: Recruit American women to supply eggs, have the embryos created in the U.S. where all this is legal and little regulated, freeze the embryos and ship them to the surrogacy brokers in India.

Google Baby was screened last month at the Toronto International Film Festival. The description of the film at its website says that director Zippi Brand Frank "doesn't interject her own opinions" about the global surrogacy business. After watching the clip, that claim surprised me.

Celebrity Knock-Off Sperm?

Osagie K. Obasogie, J.D., Ph.D. — Fri, 09 Oct 2009 21:15:33 +0000

The relationship between assisted reproductive technologies (ARTs) and celebrity status is odd. Celebrities themselves seem to have an unusually high number of multiple births, undoubtedly fueled in part by various ARTs. And people have become celebrities through ARTs, like Jon and Kate Gosselin and Nadya “Octomom” Suleman. Suleman has even been accused of trying to look like a celebrity: Angelina Jolie.

But now prospective parents can take this to a whole new level: creating children with celebrity sperm. Well, ok, at least sperm from people who kinda look like someone famous. California Cryobank recently launched its “Donor Look-A-Like” program, in which sperm donors are not only cataloged by typical traits such as hair or skin color, but which celebrity they most closely resemble. Want sperm from someone who vaguely resembles Ben Affleck, Brett Favre, and Brody Jenner? Well, Donor 11437 is your man.

This isn’t an entirely new idea. In fact, the early 1980s saw the birth of the Repository for Germinal Choice – aka the Nobel sperm bank – whose aim was to collect and disperse sperm samples from actual Nobel Prize winners in order to multiply society’s “best” genes. (It didn’t work out too well; turns out that women seeking sperm weren’t excited about getting it from wrinkled old geniuses. But imagine the run on the bank that might occur if a broker offered sperm samples from Oscar winners or sports celebrities.)

While the Nobel Sperm Bank was a much-criticized and failed attempt at positive eugenics, California Cryobank’s Donor Look-A-Likes program is no less troubling in that it promotes the idea that children are objects to be engineered – even for the most superficial reasons – rather than persons who should be unconditionally loved. Given America’s obsession with celebrity and appearance, it wouldn’t be entirely surprising if companies pushing celebrity knock-off sperm see more demand than the Nobel sperm bank. Why try to be smart when you can be pretty?

Selective Public Memory?

Pete Shanks — Tue, 22 Sep 2009 19:20:55 +0000

The naming of a new park after noted eugenicist William Shockley has drawn international attention to the small town of Auburn, California. The town council is caught in a bind: They accepted the park, and its name, apparently without being aware of Shockley's racist and eugenic opinions, and now they are drawing widespread criticism.

This is unfortunate for Auburn, but a useful reminder for the rest of us, about an issue that has never entirely gone away but is all too often forgotten. The term "eugenics" was coined in Britain, by Francis Galton in 1883, but the idea was popularized in the U.S. It was the basis of the 1924 Immigration Restriction Act, which discriminated against Jews, Italians and other "socially inadequate" groups, as defined by an "expert eugenic agent." It was also behind sterilization laws in 33 states, which in turn were the basis of the Nazi's 1933 law in Germany, the first public step toward the genocidal "final solution."

This is an appalling history, of which everyone should be aware. One important part of it is that the supporters of 20th-century eugenics included many in the mainstream, some of them very distinguished people of every political persuasion. They included Presidents Coolidge and Hoover, Supreme Court Justice Oliver Wendell Holmes, Jr., Alexander Graham Bell and many others.

The current issue involves a distinguished scientist. William Shockley shared the 1956 Nobel Prize in physics for inventing the transistor. In later years, however, he devoted much of his time and energy to genetics, work that he regarded as more important than his role in launching the semiconductor industry. He called himself a "raceologist" and focused on "dysgenics" which is of course merely the opposite of eugenics. (In using that term, he had a point -- breeding to make people "better" never caught on but sterilizing or even murdering "inferior" people was practical, and practiced.)

Shockley insisted that he was not a racist, even while claiming that African Americans are inherently less intelligent than whites. He also suggested that society should pay people with IQs less than 100 to be sterilized. He seemed to relish controversy, and campaigned for his point of view -- which might have been normal in the 1920s but fortunately had fallen way out of favor by the 1960s -- until his death in 1989.

He was survived by his widow, who lived until 2007, and bequeathed 28 acres to Auburn for a park, stipulating that it be named "Nobel Laureate William B. Shockley and his wife Emmy L. Shockley Memorial Park." (He never lived there, but the family had ties with the area; the town already has Shockley Road, Shockley Court and Shockley Woods Court.) The local Park District accepted the gift in March, and was evidently surprised when it provoked quite a local outcry.

On August 31st, the Wall Street Journal picked up on the story; so did the Canadian Broadcasting Corporation. And now the NAACP has weighed in. Their local branch is on record as supporting efforts to "prevent the Auburn community from bearing the stain of racism." The District, however, insists that the name is a done deal.

How to acknowledge and learn from the past remains controversial. Several states have issued formal apologies for past eugenics abuses, including California. North Carolina is considering how to atone to any remaining survivors of the state's eugenic program, which ran from 1929 to 1974. More than 7,600 people were sterilized under the law, which was finally repealed in 2003; compensation bills are in process now.

This is not just a history lesson. Though the violence, coercion and discrimination that characterized 20th-century eugenics are universally condemned, there are still advocates for the idea that human beings can be "improved" -- nowadays usually through market-based gene technologies. Some do not call it eugenics, on the grounds that government coercion is not involved; others frankly admit their eugenic intent. Either way, the issues remain, and deserve continuing attention.

Auburn does have an example to consider in nearby Sacramento. The state capital has renamed a high school (now Rosa Park High School) and a park (Riverbend) that used to commemorate the prominent local eugenicist Charles M. Goethe. His name, which incidentally is pronounced Gay-tee, not like the German polymath, is gradually disappearing from the California State University campus there (CSUS), which he helped develop: The University Arboretum is no longer the Goethe Arboretum, and the former Goethe House is now the Julia Morgan House, after its famous architect.

Sacramento's changes were the result of a long education effort, including a 2005 Symposium, "From Eugenics to Designer Babies: Engineering the California Dream," which covered the history and also placed it in a modern context. That event included a reception at the Julia Morgan House, which Goethe's bequest had designated as a eugenics museum; it is not. He would have been disappointed by the critical materials assembled for the conference. Many of them are available at a website on the history of eugenics in California.

Similarly, the Cold Spring Harbor Laboratory, which used to house the Eugenics Record Office, has compensated by setting up a Eugenics Archive. This invaluable resource includes historic images, facsimiles of old documents and explanatory essays.

Another website may not be what we need. But perhaps some similar permanent historical exhibit would help Auburn out of the unfortunate bind the town is now in.

Kiddie Gene Testing in China

Osagie K. Obasogie, J.D., Ph.D. — Tue, 25 Aug 2009 19:01:23 +0000

China has a longstanding reputation for identifying children’s talents at an early age in order to focus their training for future productivity. For example, China has over 300 government-funded academies that recruit children as young as five in order to prepare them for Olympic stardom. And there are rumors of eugenic breeding as well. For example, many have speculated that NBA superstar Yao Ming is the product of an arranged marriage between two talented Chinese athletes in an effort to create the next great star. Yao, however, denies these claims.

But China may be taking this effort to new levels. CNN recently reported that a new program is starting at the Chongqing Children’s Palace where parents can send their child to a five-day camp to have their DNA tested to identify their gifts and talents. About 30 children between the ages of 3 and 12 are having saliva samples examined to pull out information about their emotions, intelligence, athletic ability, and other traits.

Camp-goers are also observed and evaluated in various settings, such as playing certain sports. These observations, along with the genetic information, are used to tell parents which activities their children should focus on. The camp’s director, Zhao Mingyou, offers an eerie justification for the program: “Nowadays, competition in the world is about who has the most talent. We can give Chinese children an effective, scientific plan at an early age.”

It would be easy to suggest that objectifying children in this manner and manipulating their futures is a predictable yet unfortunate result of genetic technologies falling into communist hands. But to dismiss this growing practice as a function of a particular political ideology obscures the extent to which the growth of genetic technologies within democratic and free market societies can lead to similar results.

For example, Boulder, Colorado-based Atlas Sports Genetics offers parents a $149 genetic test that claims to predict toddlers’ natural athletic ability and the sports in which they will excel. As one parent of a 2 ½-year-old told the New York Times, “I could see how some people might think the test would pigeonhole your child into doing fewer sports or being exposed to fewer things, but I still think it’s good to match them with the right activity. I think it would prevent a lot of parental frustration.”

What does this all mean for children’s health and well-being? Today’s screening for athleticism might seem rather frivolous, especially given its limitations. But what happens when screening mechanisms for traits such as intelligence become more sophisticated? And if it becomes routine to screen toddlers for their genetic talents, are we that far away from the widespread use of assisted reproductive technologies to create children from scratch?

Genetic tests for romantic compatibility?

Jesse Reynolds — Fri, 07 Aug 2009 19:38:26 +0000

The search for a romantic partner can be extremely challenging, and rewarding. Technologies, such as the Internet, have significantly changed how we go about this. Just look at the writings on online dating here on this site, and imagine the reaction from people just ten years ago to its normalization.

Will direct-to-consumer genetic testing reshape the quest for romantic compatibility? Unlikely, although at least two companies are giving it an effort.

For only $99, the Swiss company GenePartner offers a test for what it describes as compatibility between potential partners. How can it do this?

The GenePartner project was inspired by a famous study performed by Prof. Dr. Wedekind at the University of Bern in Switzerland. In this study, Prof. Dr. Wedekind recruited female volunteers to smell T-shirts worn by men for three consecutive days and rate them for attractiveness. He then analyzed the particular part of DNA that codes for HLA (human leukocyte antigen) molecules and found that women preferred T-shirts from men whose HLA molecules were most different from their own....

In 2003, the GenePartner team decided to take this discovery one step further and see if there are specific patterns of HLA genes that "attract" each other more. In collaboration with the Swiss Institute for Behavioural Genetics, we tested a large number of individuals (both romantically involved couples and persons not in a relationship) for their HLA genes. The results were astounding and led to the development of a formula that combines the diversity factor studied by Prof. Dr. Wedekind, together with several other evolutionary factors researched and developed by the Swiss Institute for Behavioral Genetics.

Despite its credible-sounding name, the Swiss Institute is "affiliated" with GenePartner, appears to be the project of one of the company's two staff members, and has as its only project this compatibility research.

Of course, matchmakers--including those who claim to be endowed with special skills--have one of the oldest careers. And some will use new language to make old claims.

Nevertheless, one match appears to be very compatible: This type of service with superficial news coverage. GenePartner has received coverage from Time, the Washington Post, Wired online, Technology Review, The Times (UK), and Good Morning America (below). A similar company, ScientificMatch, that provides even less evidence for its work, has been profiled by the Los Angeles Times, The Economist, The Scientist, and Fox News.

Adapted from a post on Biopolitical Times, the blog of the Center for Genetics and Society.

Baseball and Genetic Testing

Pete Shanks — Mon, 03 Aug 2009 17:48:54 +0000

Baseball has long been lauded as a metaphor for American life. This used to be for qualities such as the way it combines "individual achievement with successful teamwork," or because it "connects sons and fathers" (daughters, too) but lately Major League Baseball (MLB) has become a kind of case study for dubious applications of medical and other technologies.

The debate over the use of steroids and other drugs has been all over the media, including this website, but this summer a new wrinkle has appeared: Genetic testing is being used by clubs when selecting prospects.

Wait a minute, isn't that illegal? The use of such tests by employers (and insurance companies) was the subject of last year's Genetic Information Nondiscrimination Act (GINA). That took care of the problem before it became a major issue, most people thought. But as so often happens, reality presents different questions than anticipated.

On July 16th, CNN-SI reported that the Yankees had voided a contract with a youth from the Dominican Republic who had lied about his age and name, and been caught by a DNA test. It's not clear exactly what happened in this case, but prospects frequently try to shave a year or two off their ages, sometimes by "borrowing" someone else's birth certificate. Testing parents and siblings, as well as candidates, is one way to confirm or disprove identity.

The incentive to cheat is huge. Even a minor-league contract in MLB pays a minimum of $65,000 after the first year, and in the majors it's $400,000, not to mention signing bonuses: The kid who was caught would have received $850,000 up front. That's good money anywhere -- and people in the Dominican Republic make about one-sixth what Americans do. So some people look on these identity tests as reasonable. And MLB may have found some wiggle room in GINA; the law, which comes into effect this fall, may not apply to overseas recruitment.

The New York Times followed up, and revealed that clubs have been using DNA tests for a while. At least one prospect also had to provide samples of his blood, urine and feces, and both he and his sister had bone scans too. All of this is supposedly to confirm identity, but what else can -- or might -- be found in the samples?

Predictive tests for athletic ability have been discussed for some years now. Slugging strength and base-stealing speed call for different sets of physical abilities, but in theory it's possible that an adolescent's final development could be predicted in part from his genetic make-up. Picking prospects is notoriously hard, so any edge would be particularly valuable.

But then, the opposite holds true, also. The growth of direct-to-consumer testing services has largely been focused on predicting disease, including late-onset disorders. And here's a rich baseball irony: Lou Gehrig, the iron horse, ultimately suffered from Amyotrophic lateral sclerosis (ALS), which was and is still often called Lou Gehrig's disease. ALS ended his outstanding career and killed him two years later. Would a modern prospect at even slight risk for ALS get a chance?

Kathy Hudson of the Genetics and Public Policy Center told the Times:

"DNA contains a host of information about risks for future diseases that prospective employers might be interested in discovering and considering. The point of GINA was to remove the temptation and prohibit employers from asking or receiving genetic information."

Jeremy Gruber of the Council for Responsible Genetics added: "There are many instances where employers have acquired information for one reason and used it for another."

Many of us are skeptical about the use of genetic predictive tests, but it's all too easy to imagine abuse by management.

And then there is the bizarre, science-fiction scenario of ambitious, adolescent ballplayers faking their genetic identity -- not just borrowing a birth certificate but smuggling samples into the lab. The movie GATTACA provided a primer on that in 1997.

The incentive to cheat doesn't operate just for players. Polling shows that a large majority of Americans believe that "not enough was done to prevent players from using steroids." It's easy to see why this should be so -- Major League Baseball is a huge business that is ultimately dependent on a relatively small number of stars. The scandal-plagued Alex Rodriguez makes $33 million but the New York Yankees are worth $1.5 billion. No wonder baseball is a case study for dubious technologies.

My Sister’s Keeper and Genetic Selection

Jesse Reynolds — Thu, 23 Jul 2009 06:04:10 +0000

Works of speculative fiction, especially as portrayed in movies, often highlight the spectacular potentials of technology for good and for ill. While technology’s benefits typically provide backgrounds for Hollywood’s bright and shiny futures, its drawbacks often feature at the center of plots. For example, the stories told both in the movie GATTACA and the novel Brave New World—itself set for a film production by the great science fiction director Ridley Scott—offer striking dystopian visions of reproductive and genetic technologies.

My Sister’s Keeper, the first movie based on a novel by best-selling author Jodi Picoult, confronts more subtle challenges posed by contemporary genetic and reproductive techniques. Instead of imagining worlds transformed, it focuses on family dynamics. What damage, it asks, can be wrought upon a child by parents with the best of intentions?

The story revolves around 13-year-old Anna, a child created in order to serve as a matched tissue donor for her older sister Kate, who suffers from leukemia. Anna’s umbilical cord blood is harvested when she is born. As she gets older, she undergoes a series of progressively more invasive and risky procedures to provide bone marrow and other tissues for her sister.

But after a remission, Kate’s cancer returns. Now Kate needs a kidney, and Anna’s parents assume she will make one of hers available. But Anna has a different idea. She hires a lawyer to help her become "medically emancipated" from her family.

The basic premise of My Sister’s Keeper – families who decide to create "savior siblings" to try to save an existing child – is not fictional. Technicians can screen the multiple embryos that are typically produced with in vitro fertilization and choose those that have the desired genetic characteristics. The embryo selection procedure is known as pre-implantation genetic diagnosis (PGD).

Some of these families’ efforts seem to have had completely happy outcomes, saving an older child simply by using the umbilical cord blood of the tissue-matched newborn. There are no reported cases in which a savior sibling has donated an organ. But as most observers acknowledge and as My Sister’s Keeper dramatizes, the ethical ice can get pretty thin. What happens if additional tissues are needed, and the savior sibling becomes a "spare parts baby?"

A British mother who conceived a genetically matched child to treat an older son with a rare form of life-threatening anemia recently discussed her reaction to My Sister’s Keeper with a reporter. Her story is one of the happy ones. But, she acknowledged, "It never crossed my mind that we would have to use Jamie again, and it was never mentioned to us, either." Asked what she would do if her older child has a relapse, she said, "Well, I don't know. But that wouldn't be our decision. It would be up to the courts. Not like in this film, where they just used that child for everything without even consulting her."

To some people, using PGD to create a savior sibling belongs in the same logical and ethical category as using it to choose a child’s other characteristics. Jamie’s mother adamantly disagrees. She rejects the notion that children like her son are "designer babies." "What did we design about Jamie?” she asked. "Not his eye color, his hair color, his IQ, his height."

This mother’s argument – and her family’s situation – are compelling. But in thinking about the uses and regulation of PGD, it’s important to notice that some of the design practices to which she refers are not far downhill on a very slippery slope. PGD was originally offered to prevent the births of children with fatal childhood diseases like Tay Sachs. Soon it was being used to screen out embryos with genes associated with far less serious conditions, including some that may never manifest themselves, never occur until middle age, or are treatable.

Now, not even 20 years after PGD was first introduced, many fertility clinics openly advertise that they will use it to select the sex of future children. In 2006, a survey found that 42% percent of clinics offering PGD acknowledged providing the service for non-medical sex selection.

And earlier this year, Los Angeles fertility specialist Jeffrey Steinberg announced that his clinic would soon offer PGD to choose future children’s eye color, hair color, and skin color. He initially dismissed the barrage of criticism that ensued, arguing that what he's offering is little different from existing procedures for adults: "I live in L.A. and everyone here wants to have a straight nose and high cheekbones and are perfectly happy to pay for cosmetic surgery."

Steinberg eventually backed down, at least for now, saying that he was "suspending" his offer. But this episode and the growing use of PGD to select sex make concerns about children with pre-determined traits all too relevant. Increasing knowledge of genetic function means that ever more features could potentially be selected, at least on a probabilistic basis.

Looking beyond selection to the genetically manipulated animals that now populate laboratories around the world, some enthusiasts have advocated the use of genetic modification techniques to "redesign" and "enhance" future children and generations. This is especially troubling since the US, has little meaningful public policy on reproductive and genetic technologies. Instead, we rely on non-binding guidelines drawn up by representatives of the $3 billion fertility industry. And unlike nearly every other industrialized nation, we have no federal laws prohibiting genetic modification of future generations.

Some commentators are concerned that My Sister’s Keeper will encourage unthinking rejection of a procedure that can save lives. But although the story it tells about a child expected to uncomplainingly donate her kidney is extreme, it is certainly worth careful consideration. Can we rely on parents and doctors to protect savior siblings as fiercely as they fight for the siblings their younger children were created to save? However much we assume their best intentions, we should also notice the conflicting pressures and emotional traumas they would face. And we need to acknowledge the substantial room for concern about already existing and prospective uses of PGD for non-medical purposes.

What’s needed are some basic and enforceable rules of the road for PGD and other high-tech reproductive procedures – policies that would bring the US in line with other nations. Perhaps My Sister’s Keeper will catalyze some much-needed debate.

Female sperm and male eggs: Good news for gay families?

Marcy Darnovsky, Ph.D. — Thu, 02 Jul 2009 20:08:11 +0000

In The Baby Formula, a recently released mock documentary, a lesbian couple decides that each will get pregnant with a baby related to both of them - they'll become the first women to conceive with "female sperm" created from each other's stem cells. Comedy and complications ensue. The Canadian indie comedy has been shown at several film festivals, and is garnering attention from film critics (1, 2) and bioethicists (1, 2).

Outside fictional romantic comedies, no one has tried to make human babies this way. But scientists at Newcastle University have done it in mice. The same research team has produced primitive human sperm from male bone marrow, and is now trying to create sperm from women's bone marrow stem cells.

At first glance, female sperm and male eggs might seem to offer an exciting option for gays and lesbians who want to be parents. But they're far from that. In fact, efforts to make babies with stem cell-derived gametes would turn GLBT families into guinea pigs for techno-enthusiast adventures. Here's why.

In vitro fertilization (IVF) has helped thousands of gays form families. But human reproduction using artificial gametes would be a biologically extreme enterprise, far more similar to reproductive cloning than to ordinary IVF. Gametes derived in laboratories from stem cells, like cloned embryos, have not been subjected to the evolutionary dynamics that would make them suitable for participating in reproduction.

While the psychological well-being of any children that resulted from stem cell-derived gametes wouldn't be an issue the way it is with reproductive cloning, the threats to their physical well-being would likely be just as daunting. As nearly all scientists agree, animal cloning experiments [PDF] demonstrate that trying to clone human beings would be far too dangerous. The overwhelming majority of attempts to clone dogs, cats and other mammals fail. Embryos and fetuses are miscarried; offspring are stillborn or die shortly after birth; survivors develop serious anomalies. Many animal cloning experts believe that no clones are fully healthy.

And there's broad consensus that the very investigations that would be needed to try to improve its safety would amount to unethical human experimentation. The same would be true of reproduction using male eggs or female sperm: It couldn't be tried without putting both child and mother at unacceptable risk.

The scientists working to derive gametes from stem cells are no doubt motivated mostly by scientific curiosity and a commitment to advancing biological knowledge. The makers of The Baby Formula were no doubt intrigued by a novel story line. The few voices actually advocating the use of artificial gametes in humans say they want gay families to have the same opportunities as straight ones.

Of course, any assisted reproduction techniques that are safe and ethical for heterosexuals should also be available for gays. But the obverse is also true: Reproductive methods that aren't safe enough for straight people shouldn't be promoted to gays and lesbians.

Equality can't be engineered in a Petri dish. Instead of pursuing over-the-top-risky biology experiments on babies and parents, shouldn't we focus on working for equal access to existing means of family building? And while we're at it, let's push for legal protections for gay parents and children, and full social acceptance of GLBT families.

Cloning Companions

Pete Shanks — Wed, 01 Jul 2009 16:56:47 +0000

Pets are wonderful, but cloning them is a really bad idea. It's cruel to animals, preys on the emotions of grieving humans, and unduly normalizes an unhealthy and potentially dangerous approach to the world around us. The recent announcement of the latest cloned dog -- complete with manipulative publicity -- makes this a good time to review the issue, and provide an introduction for anyone who is unfamiliar with the details.

The idea of cloning pets has been around literally since the 1997 announcement of the first cloned mammal, Dolly the sheep. John Sperling, who made his fortune out of the University of Pheonix, was reading about Dolly when he whimsically wondered if it would be possible to clone his girlfriend's dog, Missy. For a billionaire, the next move was easy: He delegated the project to his girlfriend's son, Lou Hawthorne, and paid a research team at Texas A&M to do the scientific work.

Several million dollars later, they had failed -- but they did manage to clone a cat. Hawthorne ran with the idea, and set up a company in California's Marin County with the cute name of Genetic Savings and Clone (GSC), where pet owners could bank DNA and (hopefully, eventually) commission a cloned pet.

GSC eventually went bust, but Hawthorne persisted with this and related ventures under a variety of names. He's now offering pet-cloning services through Encore Pet Science, a subsidiary of a company intended to provide genetic testing services in China. The current price for a cloned dog is $138,500 plus sales tax and shipping.

Encore has competition, notably from RNL Bio, a Korean company; a lawsuit is in process over RNLBio's allegedly unlicensed use of the Dolly technique, whose patent is owned by yet another company set up by Sperling. Korea is the center of pet cloning: Hawthorne's scientific partner is Hwang Woo-Suk, who became famous for cloning human embryos for stem cells and then notorious when it turned out he had faked the work, misappropriated money and broken laws about obtaining human eggs -- but whose animal-cloning expertise is real.

Highlighting the absurdity of the people involved in pet cloning is easy (my colleagues and I have done so here and here and here) but there are serious questions involved. A few dogs have now been cloned, as well as a few household cats. The commercial efforts are generally not the subject of scientific papers but the success rate is indisputably small. That means lots of suffering by animals, both the clones and the females who are impregnated with them. According to a 2008 peer-reviewed survey, only 1%-5% of all cloned embryos transferred into surrogate mothers develop into viable offspring. Moreover, clones that are born, and survive, are probably not entirely healthy.

Another important note is that clones, even if apparently healthy and somewhat similar to their progenitors, are by no means identical to them. Says Robert Lanza, who has cloned several species:

"Anyone who thinks they might be able to get Spot or Fluffy back is mistaken. Cloned animals have distinct personalities, just like identical twins. We cloned a herd of cattle several years ago -- they were all cloned from a single individual. Yet they developed a social-dominance hierarchy just like a herd of ordinary dairy cows. The cloned animals exhibit the full spectrum of behavioral traits, from curious and inquisitive to timid and shy. There's no doubt about it: each cloned animal has its own unique, individual personality."

Families who lose their pets, or begin to anticipate this loss as the pets grow older, are understandably upset. Dogs and cats make great companions, and this can actually have health benefits for people. But grief can take people over a fuzzy line, and denial is a common first reaction. Those who exploit other people's grief, reinforcing their denial by insisting that they can replace a once-loved companion, are treating serious issues frivolously, for their own profit.

The public is not rushing to use these services; most people have too much sense (and not enough money). Even Hawthorne has admitted that pet cloning is not yet a paying proposition. So the back-up justification is that developing the technology will in some way benefit research into human diseases. This sounds suspiciously like an attempt to justify what you already want to do for other reasons.

My guess is that the mindset involved is about control: controlling nature (viewed as something separate from ourselves), and in our homes, the desire to define and control our pets the way we choose our wallpaper or color scheme.

There is also a wider context. Sperling was not, in the medium term, primarily focused on cloning a dog. He had ambitions to prolong human life indefinitely, and perhaps for creating "post-humans," but as a practical matter he, like Lanza, became involved in cloned livestock. The FDA has now permitted, at least in principle, the sale of meat from cloned cows, despite the uncertainties involved in the process, including what many see as health risks to people who eat them.

All this is part of a trend toward turning natural products into patentable commodities. It's clearly related to the activities of seed companies who are selling patented, genetically modified seeds (which so far benefit the seller much more than the farmer, let alone the consumer). It is also related to the concept of "improving" people. Given recent findings about the complications of the genome, that may not be possible, but the fantasy seems to have great appeal to a small minority.

Cloning pets is a way to make these dangerous concepts seem acceptable. Fortunately, so far, public opinion is firmly against them, but the U.S. -- unlike most advanced nations -- does not even have a legal prohibition on cloning people, and has no adequate mechanism for preventing experimentation on modifying our children either. Banning pet cloning would be a useful start.