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Author: Gaia Bernstein

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Prohibitions on Egg and Sperm Donor Anonymity and the Impact on Surrogacy

Egg and sperm donations are an integral part of the infertility industry. The donors are usually young men and women who donate relying on the promise of anonymity. This is the norm in the United States. But, internationally things are changing. A growing number of countries have prohibited egg and sperm donor anonymity. This usually means that when the child who was conceived by egg or sperm donation reaches the age of eighteen he can receive the identifying information of the donor and meet his genetic parent.

An expanding movement of commentators is advocating a shift in the United States to an open identity model, which will prohibit anonymity. In fact, last year, Washington state adopted the first modified open identity statute in the United States. Faced by calls for the removal of anonymity, an obvious cause for concern is how would prohibitions on anonymity affect people’s willingness to donate egg and sperm. Supporters of prohibitions on anonymity argue that they only cause short-term shortages in egg and sperm supplies. However, in a study I published in 2010, I showed that unfortunately that does not seem to be the case. My study examined three jurisdictions, which prohibited donor gamete anonymity: Sweden, Victoria (an Australian state) and the United Kingdom. It showed that all these jurisdictions share dire shortages in donor gametes accompanied by long wait-lists. The study concluded that although prohibitions on anonymity were not the sole cause of the shortages, these prohibitions definitely played a role in their creation.

In a new article, titled “Unintended Consequences: Prohibitions on Gamete Donor Anonymity and the Fragile Practice of Surrogacy,” I examine the potential effect of the adoption of prohibitions on anonymity in the United States on the practice of surrogacy. Surrogacy has not been part of the international debate on donor gamete anonymity. But the situation in the United States is different. Unlike most foreign jurisdictions that adopted prohibitions on anonymity, the practice of surrogacy in the United States is particularly reliant on donor eggs because of the unique legal regime governing surrogacy here.  Generally, there are two types of surrogacy arrangements: traditional surrogacy and gestational surrogacy. In a traditional surrogacy arrangement the surrogate’s eggs are used and she is the genetic mother of the child, while in gestational surrogacy the intended mother’s eggs or a donor’s eggs are used and the surrogate is not the genetic mother of the conceived child. Most U.S. states that expressly allow surrogacy provide legal certainty only to gestational surrogacy, which relies heavily on donor eggs, while leaving traditional surrogacy in a legal limbo. Without legal certainty, the intended parents may not be the legal parents of the conceived child, and instead the surrogate and even her husband may become the legal parents. Infertility practitioners endorse the legal preference for gestational surrogacy also for psychological reasons, believing that a surrogate who is not genetically related to the baby is less likely to change her mind and refuse to hand over the baby.

The adoption of prohibitions on anonymity in the United States could destabilize the practice of surrogacy in a way that did not occur in other countries that adopted these prohibitions. If, as has happened elsewhere, prohibitions on anonymity will play a role in creating shortages in donor egg supplies in the United States, this could affect the practice of surrogacy in two ways. Individuals seeking surrogacy may need to resort to traditional surrogacy, which does not rely on donor eggs, with the accompanying legal uncertainty. Alternatively, those deterred by the uncertainty enveloping traditional surrogacy may refrain from seeking surrogacy altogether, resulting in a significant contraction of  the practice of surrogacy in the United States. These potential complications suggest that those supporting the adoption of prohibitions on anonymity in the United States, should consider these changes with great caution and think beyond the traditional debate about the privacy of the donors, the privacy and procreational interests of the intended parents, the best interests of the children and the direct effect on gamete supplies.

 

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Intensive Parenting as a Legal Standard: Arresting Mother for Sending Children to Bus Stop

An unfortunate event took place this week.  A six year old boy’s foot was run over by a school bus. As a result, the boy’s mother who sent the boy and his somewhat older brother unsupervised to the bus station was arrested and charged with child abuse and neglect.  It turns out that in 2012, sending a six year old and his older brother to await the school bus by themselves is an unacceptable parenting standard warranting parental arrest.

This made me think back to the 1970s, when I grew up in Israel, and from the age of six walked by myself to the bus station and took the public bus – not even a school bus — to school. Luckily, my foot was not run over by a bus. But even if it had I doubt my parents would have been arrested or even blamed for inappropriate parenting. All my classmates either walked by themselves up to twenty minutes to school or if they lived further away, as I did, took the public bus.

There is no doubt parenting norms have changed since I was a child. Many now recognize that parenting has become more intensive, involved and monitoring. In an article titled Over-Parenting, my co-author Zvi Triger and I worried about the impact of these changes on legal standards. We recognized that while intensive parenting carries some advantages and may be a suitable parenting practice for some, embedding it in legal standards would impose it on those culturally unwilling or financially unable to endorse it. We recognized that intensive parenting is mainly an upper-middle class practice that for others could become over-parenting.

Is it a good parenting norm to accompany young children to the bus stop? probably yes. But aren’t the real questions: Is the specific child mature enough to be safely standing at a bus stop ? Is the neighborhood a relatively safe neighborhood traffic and crime-wise? And also, can parents afford to wait with their child in the morning or do they have no choice but to rush off to work for an early morning shift in order to support their families? These are questions to be answered by parents not by the law.

 

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Why Did Egg Freezing Wait So Long?

Thank you to the permanent bloggers of Concurring Opinions for having me back. It is great to be here.

Egg freezing has become the new hot trend in the infertility industry. Although infertility practitioners first used  egg freezing in the mid 1980s,  it was only recently that success rates have significantly risen making this an attractive option for women.  A woman can now freeze her eggs at any age and use it a few years later or much later with the sperm of her then chosen partner or a donor to have a baby through IVF. Using egg freezing technology, a woman can today have a baby at a time that best suits her career and family situation.

There is no doubt that egg freezing as a viable option is a huge revolution for women’s autonomy. But the big question is why only now? Why has egg freezing become a really viable option only during the first decade of the Twenty-First Century. We have known how to freeze sperm since the 1950s. And, embryo freezing was first tried out around the same time as egg freezing, during the mid-1980s. Yet, unlike egg freezing, embryo freezing became common practice soon thereafter. So why did we have to wait so long for effective egg freezing technology?

The answer usually given to this question is that it was just too complicated technologically and took a long time to develop. But were technological complications the only cause for delay?  Is it really much harder to freeze and thaw eggs for later IVF use than to freeze and thaw embryos for later use? We tend to be taken by the illusion that science is value neutral — that scientific progress is not affected by choices directed by social values. But even if technological diffiuclties played a role in the delay, could egg freezing technology have been held back because resources were invested elsewhere? Unlike other forms of reproductive technology that promote the reproductive interests of both men and women, egg freezing promotes mainly the autonomy interests of women.  Egg freezing’s impact on women autonomy can be compared only to the revolutionary effect of the birth control pill. At the same time, the infertility industry is comprised overwhelmingly by male practitioners. And while some have no doubt worked relentlessly to promote egg freezing technology, it may be time to stop assuming that technological complications held back this important women emancipating technology. It may be time to begin asking whether  the advancement of egg freezing was placed on the back burner for years because of the type of interests it promotes?

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Intensive Parenting Enforced: Parents Criminal Liability for Children Skipping School

I have written here about the trend of intensive parenting. Parents today are more involved in their children’s lives than ever before, constantly cultivating and monitoring their children’s progress. In our article, Over-Parenting, Zvi Triger and I caution against legal enforcement of intensive parenting norms. One area in which states have been most active recently in enforcing intensive parenting norms is parental involvement in schools.

Earlier this month California’s Senate adopted a bill that authorizes prosecutors to charge a parent with a misdemeanor, punishable by up to one year in jail and a $2,000 fine, if her child skips school on a regular basis. This law enforces intensive parenting. Parents engaging in intensive parenting are extremely involved in their children’s school activities. Volunteering in school activities, whether as a class trip chaperon or in school events has become the norm among both working and non-working parents.  Schools provide parents with access to the school website to monitor children’s grades, class attendance and even lunch menus. Parents regularly attend family mornings at their children’s schools and are required to participate in children’s homework preparation through questions targeted specifically at them. Given this background, the California Bill, as extreme as it may sound to some, is not surprising. This Bill merely seeks to enforce what has already become a dominant social norm of intensive parental involvement in children’s school lives.

Some may think that the California Bill is not such a bad idea.  After all don’t we want to ensure that children attend school regularly and eventually graduate from high-school. However, what may be a desirable social norm is not necessarily a good legal standard. A stay-at-home mom dealing with a difficult teenager and successfully assuring that her daughter attends school on a regular basis is no doubt helping her daughter. But do we want to hold the mother who fails to do so criminally liable?  Parents are differently situated in their ability to control their children. Intensive parenting is a middle class parenting norm. Lower income class parents juggling several jobs may not have the flexibility to personally supervise  their children to ensure they don’t skip school. In addition, this Bill, like intensive parenting norms, is in practice, gender biased. Intensive parenting heavily burdens mothers.  Should states adopt and enforce laws holding parents criminally liable for their children’s school attendance, it will most likely be the mother, who is usually seen responsible for children’s daily activities, who will end up being held criminally liable.

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An Alternative Story about the Success of Digital Music

Many consider digital music a success. But, looking back at the history of an older music technology – the CD – should make us pause. The CD was invented in 1982 and made its market debut the same year with Billy Joel’s album 52nd Street. It was adopted quickly and in 1987 surpassed the sales of vinyl records. Digital music, on the hand, suffered a different fate

Digital music technology was invented in the early 1980s.  Several advances enhanced its marketability. The latest steps occurred in 1998 when Napster added the distribution advantage through file sharing and a fully functional MP3 player allowing portability was released. But, surprisingly, a decade later, the latest available music sales statistics show that in 2008 CD sales still compromised 77.8% of music sales, while digital music sales comprised only 12.8%.

This delayed adoption of digital music is perplexing given the overwhelming advantages of digital music over CDs. One factor that doubtless affected the sales of digital music is downloading from file sharing networks. But, I would like to offer another explanation. I believe that copyright enforcement particularly through technological measures — use of digital rights management systems (DRM) - played a role in delaying the adoption of digital music.  DRM limit interoperability between digital music devices and music tracks. For example, Apple, the owner of the leading digital music device iPod, refused to license its Fairplay DRM system to competitors. The result was that music purchased from iTunes and protected by Fairplay could only be played on iPods and other Apple devices. Surveys showed that DRM’s effect on interoperability frustrated consumers digital music experience and that consumers were more likely to purchase digital music if DRMs will be removed.

This story about the delayed adoption of digital music is not commonly told. But, it is an important story to tell for two reasons. First, those objecting to copyright enforcement argue that lawsuits against file sharing systems, such as Napster or Grokster, inhibit innovation in dissemination technologies.  But, they fail to address the policy argument of the dissemination failure of digital music technology itself.

Secondly, and even more importantly, by focusing on the adoption failure the parties to the digital music copyright disputes could find common ground. Both could benefit from accelerated adoption of digital music. Clearly, individuals who do not use digital music fail to benefit from the immediacy of downloading, the ability to choose individual songs and general convenience of digital music. But, the music industry could also benefit from a rise in the sales of digital music. Digital music allows direct selling resulting in savings on storage and mobilization of physical products.  It does not involve physical copies so music providers do not end up with redundant copies of CDs. Music providers can also benefit from the flexibility of providing consumers with the option to buy specific songs — this lets them cater to a broader range of tastes and expand their sales. And finally. digital music allows instant delivery – again allowing expansion of sales through profiting from impulse buys.

There are good reasons then to consider the delayed adoption of digital music. For a more complete description of this alternative story, see here.

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How Useful is Facebook Users’ Information?

A lot has been written on Facebook and its users loss of privacy. In fact, for some, Facebook and loss of privacy have become synonyms. A major fear involves the use of Facebook users’ personal information by information aggregators who will use the data to target the sale of products.  I do not intend to contest here that Facebook users disclose a lot of personal information. But, I want to look at how accurate is the information that Facebook users reveal on Facebook. 

When people surf the Internet their personal information, websites and searches are collected by cookies. As I have written, people tend to disregard these privacy threats at least partly due to their lack of visibility. Even those who know that their information can be collected by cookies, tend to forget it as they use the Internet on a daily basis.  As a result the information collected by cookies reveals relatively true preferences. Cookies will reveal embarrassing or secret facts, such as visits to pornography sites or to  medical sites to investigate a worrying medical condition.

But Facebook is different. Facebook users are constantly aware they are being viewed. True, they may not be thinking about the companies that may eventually aggregate the information. But, for sure they are thinking of the hundreds of friends who will be reading their status updates, examining their favorite books, favorite movies and linked websites. Facebook users “package” themselves. They present themselves to the world the way they want to be perceived. Their real preferences and tastes may be somewhat or even completely different from those they present on Facebook. A criminal law professor may have in her Facebook library collection legal theory books, while in fact in her spare time she is an avid purchaser and reader of chick lit books. A twenty year old college student may want to appear cool placing links to trendy music, although his real passion remains the collection of Star Wars figures.

Some information on Facebook, such as date of birth or marriage status is less likely to be mispresented by users and provides rich ground for data mining.  But Facebook users “packaging”  raises two issues. Companies seeking to target consumers with products they actually want to purchase may find Facebook information less useful than believed. And from a privacy perspective, it is not merely the disclosure of true personal information that we should be concerned about but the creation of false or misleading  individual profiles by data mining companies that can eventually change the information and consumption options available to these Facebook users.

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The Havasupai Indians, Genetic Research and the Problem of Informed Consent

Researchers can gain significant genetic information by studying indigenous and preferably isolated populations. Although both researchers and indigenous populations can gain from this collaboration, the two  groups often do not see eye to eye.  This was the case of the collaboration between the Havasupai Indians and researchers from Arizona State University, which resulted in a long legal fight. The Havasupai Indians were suffering from high prevalence of diabetes and agreed to give their blood samples for genetic research on Diabetes. The members of the tribe were infuriated when they found out later that their blood samples were used for other purposes, among them genetic research on schizophrenia.

The New York Times reported yesterday that this conflict resulted in a settlement in which Arizona State University agreed to pay $700,000 to the tribe members and also return the blood samples. The Havasupai Indians’ main legal claim was of violation of informed consent. Informed consent requires that patients and research subjects receive full information that will enable them to decide whether to adopt a certain medical treatment plan or participate in research. Here, the Havasupai Indians argued that the informed consent principle was violated because they were told that their blood samples will be used for one purpose while, in fact, they were used for another.

No doubt, the Havasupai Indians informed consent argument resulted in their victorious settlement. But, the harder question is whether informed consent principle can be feasibly applied  in the area of genetics.  Genetic information is not just individual information it also provides information about groups and families. For example, assume there is a tribe in which some members agree to participate in genetic research investigating Manic Depression.  Other members of the tribe refuse because they are concerned that a result showing that there is a prevalent genetic mutation for Manic Depression among them could stigmatize them and even lead to discrimination against the tribe. The researchers collect samples only from the members of the group who agree to the research. But,  the results  still provide genetic information on all members of the tribe even those who refused to participate because of their genetic connection to those who participated. 

The result in the Havasupai settlement cannot be seen then as a victory for the principle of informed consent in the area of genetics. Restricting genetic researchers to use of samples only for the purpose for which they were collected only partly resolves the informed consent problem. The group nature of genetic information makes the application of informed consent to genetic research much more complicated than that.

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Over-Parenting

Benches in playground are deserted these days. Instead, parents are swinging their children while chanting the ABC. Raising my small children, I have observed that parenting has changed dramatically since I was a child – today’s parents are much more involved in their children’s lives than ever before.  In our paper titled: “Over-Parenting,” my co-author Zvi Triger and I describe this new trend of parenting, which we call “Intensive Parenting.” We show that the law already enforces Intensive Praneting and argue that despite  the advantages of Intensive Parenting, its norms should not be hastily incorporated into the law.

The intensive parent is on a constant quest to obtain updated knowledge of best child rearing practices and use this information actively to cultivate her child and monitor all aspects of the child’s life.  Intensive parenting begins as the pregnant mother accesses an ever increasing amount of information instructing her on how to achieve an optimal pregnancy and does not end when the child enters college. Colleges and more recently even law schools have adjusted to accommodate a new generation of parents who insist on being in direct contact with administrators and professors in order to continue to monitor their children’s life.

But, Intensive Parenting is not just about social norms. We show that it is actually a socio-technological trend. Parents use new information technologies to enhance their ability to monitor and be informed. For example, parents use the cellular phone to stay in constant touch with their children. Commentators observing Intensive parents using the cell phone to communicate with college aged children about the smallest anecdotes of life, have called it ”the world’s longest umbilical cord.”

And what does the law have to do with it? We find that the law is already enforcing Intensive Parenting norms, and is particularly powerful in molding parental rearing norms during custody disputes. For example, courts determining custody allocations consider as a factor the parents’ pre-divorce care taking roles and division of labor. The parent who was more involved in the child’s life before divorce has an advantage in custody resolutions. In practice, attorneys are advising their clients on the eve of divorce to engage in Intensive Parenting. The time period before custody determinations becomes a race for involvement, particularly for the parent who was not originally the primary caretaker. Unfortunately, parents eager to gain custody and operating in a world governed by Intensive Parenting norms often become overly dominating in their interaction with children. For instance, by taking over sport practices leaving their child with no independent outlet or by overwhelming their child with constant messages and phone calls.

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23andMe – Has GINA Failed to Live Up to its Promise?

 23andMe is a genetic testing Internet site, which offers testing for over 100 genetic diseases and traits as well as ancestry testing. Many viewed 23andMe as the vehicle, which will bring genetic testing to the masses. It was promoted by “spit parties”  in which attendees spat into a test tube to have their saliva analyzed to produce their genetic profile. Yet, recently the New York Times reported that two and half years after it commenced service 23andMe has not attained its expected popularity. The report tied 23andMe’s lack of popularity to the limited usefulness of genetic information – genetic science’s inability to predict with certainty that a person is going to get sick.

And true, genetic science is all about probabilities. A genetic test can rarely predict with a 100% certainty that a person will incur a disease. I doubt, however, that this limitation is holding 23andMe back. Unfortunately, people are not very good at understanding the statistical results of genetic testing.  If anything, a woman who is told that she has a 60% of getting breast cancer is likely to dismiss the actual statistics and believe she is going to get sick. It is quite unlikely that people decided not to use 23andMe because of the low probabilities that accompany many genetic tests’ results.

Instead, fears of genetic discrimination likely played an important role in 23andMe’s failure to popularize genetic testing. People are afraid that if they undergo genetic testing and receive positive results they may lose their health insurance or their employment. As I have documented, these fears prevail although empirical data shows that genetic discrimination is in fact rare. Consequently, many individuals are inhibited by genetic discrimination concerns and choose not to undergo genetic testing.

Recently, the government enacted a relatively comprehensive federal law against genetic discrimination – the Genetic Information Nondiscrimination Act of 2008 (GINA). An important goal in legislating GINA was to alleviate fears of genetic discrimination. It was hoped that the enactment of a comprehensive federal law will provide a sense of protection and reduce genetic discrimination anxiety.  The failure of 23andMe to attain widespread popularity indicates that at least so far GINA has not been as successful as was hoped in quieting fears and encouraging the use of genetic testing technology.

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BRCA1/2 Gene Patents Invalidated: Is it Finally about the Patient?

Earlier this week a district court in a dramatic decision invalidated BRCA 1/2 – two breast cancer gene patents held by Myriad Genetics. The Court based its decision on patent subject matter analysis holding that since the isolated DNA covered by Myriad’s patents is not markedly different from the native DNA as it exists in nature, it qualifies as a product of nature, which is not patentable subject matter.

No doubt, as commentators have noted (here and here), this decision if not overturned or limited on appeal could carry broad ramifications for the future gene patents. But, this decision signifies also a change in strategy in the efforts to restrict gene patents – a focus on the patient.

As I have written, most of the debates on gene patents addressed the way that gene patents affect genetic research – the concern that granting patents on the building blocks of genetic science will hinder the development of more complex innovations. Unsurprisingly, most academic proposals and legislative bills address the innovation problem. The effects on the patient until now took a back seat.

This lawsuit against Myriad signifies a change in that it finally places the patient and the administration of genetic testing at the center of the stage.  Although the Court’s holding focuses on patent subject matter the court dedicates a significant part of the opinion to access to BRCA1/2 genetic testing. Myriad charges about $3,000 for testing an exorbitant amount compared to other genetic tests. Furthermore, Myriad does not allow other laboratories to conduct the testing – all samples have to be sent to its headquarters in Salt Lake City. The opinion tells the stories of women who were unable to test to find out whether they carry the BRCA1/2 genes because Myriad would not accept their insurance. It recounts the ordeals of women who could not get definitive answers through Myriad’s testing and were precluded from seeking testing elsewhere. It underscores that women were unable to get a second opinion of the test results because tests are conducted only by Myriad. It also discusses the efforts of doctors and laboratories who were willing and able to offer BRCA1/2 testing but were precluded by Myriad from conducting the testing. 

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