Our Bodies, Ourselves (172 page)
Read Our Bodies, Ourselves Online
Authors: Boston Women's Health Book Collective
The remarkable and exponential growth of infertility services across the globe, as well as the increasing use of ARTs that have not been adequately assessed for safety, requires new and more effective alliances among feminists, public health advocates, ethicists, and others who recognize the serious threats to women's health and human rightsâespecially for more vulnerable women enticed by misleading advertising and prospects of income.
One group that has taken the lead in such movement building is SAMA: Resource Group for Women and Health, located in New Delhi. In 2010, SAMA brought together scholars, activists, and researchers from around the world
to develop strategies that will address these issues and also call for more efforts to identify and remove the environmental causes of infertility. “Unraveling the Fertility Industry,” a report from the conference, is available at samawomens health.org.
Since 1980, the U.S. Patent and Trademark Office (USPTO) has issued patents on the genes of living organisms, despite the widespread objection that genes are products of nature and not human-made inventions. The controversy has intensified with the patenting of human genes in the early 1990s.
In 2007, Rep. Xavier Becerra (D-Calif.) introduced the Genomic Research and Accessibility Act (H.R. 977) to prohibit the patenting of human genes and human genetic information. This act cited many justifications, from the points of view of both researchers and patients. Numerous researchers have been concerned that the patenting of and monopoly on a particular human gene reduce information sharing, innovation, quality control, and competition. For health consumers, patenting reduces availability of tests, increases cost, limits alternatives, and prevents second opinions.
The American Civil Liberties Union (ACLU), the Public Patent Foundation, and twenty co-plaintiffs filed a lawsuit in 2009 against the USPTO, Myriad Genetics, and the University of Utah Research Foundation, charging that patents on two human genes associated with breast and ovarian cancer are unconstitutional and invalid. The suit focused on the BRCA1 and BRCA2 genes, mutations of which are related to increased risk of breast and/or ovarian cancers, and for which Myriad Genetics controls the patentsâeffectively controlling the available testing for important mutations.
Breast Cancer Action and Our Bodies Ourselvesâthe only two women's health groups that are co-plaintiffsâbelieve that when one company controls all the testing, less information and fewer resources are available to both patients and researchers. Some doctors and researchers involved with the lawsuit contend that this monopoly has long held up not only competing, cheaper tests but also important gene-based research.
In 2010, a U.S. federal district court judge's ruling in the case invalidated the patents, arguing that the company deserved praise for what is “unquestionably a valuable scientific achievement,” but not a patent, because the “claimed isolated DNA is not markedly different from native DNA as it exists in nature.”
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Essentially, the relevant genes are found in nature and thus, like other products of nature, are not patentable.
The judge did not address the question of whether the USPTO had violated the Constitution. After the decision, the U.S. Department of Justice withdrew its support for human gene patents, agreeing that genes themselves are not patentable. The ruling has the potential to make the study of and testing for important genetic variations cheaper and more readily accessible. This court decision was appealed in 2010 to a federal appellate court. For updates on the case, visit aclu.org/brca.
GENETIC MODIFICATION OF FUTURE GENERATIONS
Inheritable genetic modification (IGM, also called germline engineering) means changing the genes passed on to future generations. The genetic changes would be made during in vitro fertilization (IVF)âa process by which egg cells are fertilized by sperm outside the bodyâin eggs, sperm, or early embryos. The modified genes would appear not only in the person who developed from that gamete or embryo, but also in all succeeding generations. It would be by far the most consequential type of genetic modification, as it would open the door to irreversibly altering the human speciesâand these permanent changes could include unintended consequences.
Genetically modified plants and animals are now relatively common, but IGM has not been tried in humans. The production of cloned or genetically modified animals requires repeated attempts, the vast majority of which result in nonviable fetuses or in animals that die shortly after birth or have reduced life spans. Because cloning or IGM in humans would likewise result in large numbers of failed attempts, any research program would represent unethical experimentation on humans.
Some advocates of IGM say it can be used for medical purposesâsuch as to avoid the birth of children with genetic impairments or diseases. Even if this were possible, safe, and desirable, the same end can almost always be achieved using the embryo selection technique called
preimplantation genetic diagnosis
. disability rights advocates point out that even embryo selection exerts pressures on women to produce the “perfect baby” and can create new forms of discrimination and prejudice based on genetics.
A disturbing number of influential scientists and biotechnology entrepreneurs are openly promoting the idea of using IGM in efforts to produce children with so-called genetic enhancements, referring to better looks, talents, and intelligence. Whether used for purposes of therapy or enhancement, inheritable genetic modification would be likely to entail harmful effects that are impossible to predict, regardless of how much previous research is conducted.
Many early discussions of inheritable genetic modification proposed drawing a line between its use for the treatment of disease and its use for enhancement of traits, such as height, eye color, strength, coordination, and intelligence. However, people often disagree about what constitutes an enhancement and what constitutes a necessary medical intervention. Many procedures that were introduced for medical purposesâsuch as plastic surgeryâbecame commercialized for clearly nonmedical use soon after their introduction. In addition, some potential modifications would fall somewhere between treatment and enhancementâstrengthening the immune system, for example, or increasing general alertness. It is increasingly clear that our society has not found effective ways to distinguish between what is an enhancement and what is a necessary medical intervention.
Some proponents of human genetic enhancement say they look forward to the day when parents can quite literally assemble their children from genes listed in a catalog. Fortunately, there is growing public debateâfostered by prominent ethicists and public health advocatesâpointing to inherent dangers with such scenarios.
Princeton University biologist Lee Silver envisions the possibility that inheritable genetic modification will eventually lead to the emergence of genetic castes and human subspecies. “The GenRich class and the Natural class will become ⦠entirely separate species,” he has written, “with no ability to cross-breed, and with as much romantic interest in each other as a current human would have for a chimpanzee.”
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As George Annas, chair of the Department of Health Law, Bioethics & Human Rights at Boston University School of Public Health, has noted, to the extent such visions are at all realistic, such a division of the human species is a sufficient argument against pursuing human inheritable genetic modification.
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The profound social impacts of inheritable genetic modifications, as well as their potential impact on the entire species, mean that no individual scientist, corporation, or country has the moral authority to make the decision to use such technology.
Some advocates of IGM (and of reproductive cloning and sex selection) are attempting to appropriate the language of the reproductive rights movement, claiming that these high-tech procedures are extensions of individual choice and privacy rights. This claim blurs the difference between the right for which women have fought for so many yearsâthe right to terminate an unwanted or unsustainable pregnancyâand a very different thing: the right of individuals (parents) to manipulate the biological traits of a future child. Women's health advocates need to challenge this co-optation of language in the public debate on biotechnology issues.
Given the far-reaching consequences of these technologies, we owe it to ourselves, our children, and future generations to think carefully about which ones we can responsibly and beneficially use as a society. The key question is where and how we would draw the line. Our Bodies Ourselves believes that the United States should join the emerging international consensus and pass laws against human reproductive cloning and inheritable genetic modification.
Activism in the Twenty-first Century
O
n May 31, 2009, antiâabortion rights activist Scott Roeder shot and killed Dr. George Tiller during Sunday morning services at Tiller's church in Wichita, Kansas. The target of constant protests, Tiller had survived a clinic bombing, previous shooting, and multiple legal challenges to close his practice, Women's Health Care Servicesâone of only three clinics in the country that performed abortions after twenty-one weeks.
Within days of Tiller's death, Steph Herold, a twenty-one-year-old recent college grad who was working as an abortion counselor in Pennsylvania, created the website I Am Dr. Tiller (IAmDrTiller.com). She sent the link to feminist blogs and women's clinics, asking for stories from individuals working to make abortion safe, legal, and accessible. Submissions came in
from nurses, medical students, escorts, volunteers at abortion funds, and abortion doctors themselvesâall of whom held up a sheet of paper or sign proclaiming “I Am Dr. Tiller.” Criticism by Fox News host Bill O'Reilly only increased the site's popularity.
Courtesy of IAmDrTiller.com
Herold also created a Twitter accountâ@iamdrtillerâto promote the stories and, later, to continue sharing facts and information around reproductive rights and justice and to connect with other pro-choice activists. She also founded a blog run by a group of young feminist activists (
read her story
).
Using new media tools and technologies, it's easier for us to find and build community and make our voices heard. Today, anyone with a mobile phone or Internet connection can share information, create awareness, and attract the attention of policy makers or other stakeholders. While traditional forms of activismâsuch as street protests, boycotts, and well-crafted media campaignsâare still necessary and effective ways of gaining support and attention for some causes, the Internet and social media have transformed not only how we organize but also our ideas about what organizing or activism means.
There has never been a greater likelihood that one voice can make a difference. In fact, a far-reaching campaign is often started by just one person taking actionâand today it might begin with blogging or raising awareness on Facebook, or tweeting about an injustice happening this very second. What may start as a small group of voices united by a common goal or grievance can develop into an organized and sustainable movement.
One group using the latest technological tools to effect change, the crowd-sourced initiative Hollaback! (ihollaback.org), formed to counter the street harassment frequently encountered by women and LGBTQ individuals. The movement encourages people to share their stories and to report instances of street harassment, from unwanted verbal attention to acts of touching or groping, using mobile technology such as the Hollaback! iPhone app. From its founding in New York City in 2005, Hollaback! has grown into an international movement.
We also have access to more information and viewpoints than ever before. Politicians, activist groups, and media sources keep us informed via email, text messages, and social networks. Racialicious (racialicious.com), Colorlines (color lines.com), Feministing (feminist ing.com), Pam's House Blend (pamshouseblend.com), Feministe (feministe.us/blog), Pandagon (pandagon.net), INCITE! Women of Color Against Violence (inciteblog.wordpress.com), Shakesville (shakespearessister.blogspot.com), and The F Word (thefword.org.uk) are more than sites to visit for daily news and activism; they're feminist communities where readers share, commiserate, and challenge one another. The do-it-yourself dynamic of blogs enables a wide variety of voices to reach a larger audience and become part of the dialogue.