GeneWatch Vol. 31 No. 1

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ISSN 0740-9737

GeneWatch January-July 2018 Volume 30 Number 1

Editor and Designer: Samuel Anderson Editorial Committee: Sheldon Krimsky, Jaydee Hanson

GeneWatch is published by the Council for Responsible Genetics (CRG). Founded in 1983, CRG’s mission is to foster public debate on the social, ethical, and environmental implications of new genetic technologies. The views expressed herein do not necessarily represent the views of the CRG or ICTA staff or Board of Directors. The Council for Responsible Genetics is a project of the International Council for Technology Assessment 660 Pennsylvania Ave Suite 302 Washington, DC 20003 Phone: 202-733-4094 CRG also has a Post Office box address in Cambridge, Massachusetts: Council for Responsible Genetics PO Box 400559 Cambridge, MA 02140 Correspondence can be sent to:

Editor’s Note

Samuel Anderson

DNA ancestry testing has been around long enough that if you are reading this, someone in your family has most likely sent a DNA sample to an ancestry testing service like Ancestry. com or 23andMe. If your family is anything like mine, you probably heard about it one way or another (when they posted their results on Facebook or talked about it at Thanksgiving), and if that person is a biological relative, those results tell you at least a little bit about your own ancestry. These services are built partly around genetic markers that estimate regions of the world where your ancestors “originated.” In the truest sense of the word, all of our results would read “100% East African,” but since that’s obviously not what customers are looking for, the testing companies aim for ever more recent and geographically precise groupings. You may get extraordinarily detailed results for any European ancestors, such as “Eastern Slovakia” or “Devon & Cornwall.” For African ancestry, as Fatimah Jackson writes in this issue, it’s a very different story. lists only nine “DNA Regions” from Africa, the most genetically diverse continent on earth. For Europe, meanwhile, they list 117 DNA regions, including at least four categories specific to Norway and a dozen for Ireland. All the while, the companies are hanging on to the DNA data used to get these results. This raises a host of privacy concerns, from companies’ ability to sell your data to government’s ability to access it. For a comprehensive overview of these issues, see CRG’s 2017 report, “Ancestry DNA Testing and Privacy: A Consumer Guide.” (http://www.councilforresponsiblegenetics. org/img/Ancestry-DNA-Testing-and-Privacy-Guide.pdf ) As Helen Wallace writes in this issue, there are already examples of police obtaining individual DNA data from testing companies. We’ve seen in recent high-profile cases that police can search ancestry testing results even more easily. When a genealogy enthusiast sends their DNA to an ancestry testing service, it will search for matches with others who have sent in their own DNA, potentially revealing long-lost relatives and continued on page 17


comments and submissions

Sheldon Krimsky, Executive Director, Ad Interim Samuel Anderson, Editor of GeneWatch Martin Levin, Senior Fellow Elizabeth Small, Fellow

GeneWatch welcomes article submissions, comments and letters to the editor. Please email if you would like to submit a letter or any other comments or queries, including proposals for article submissions. Student submissions welcome!

Cover Design Samuel Anderson

founding members of the council for responsible genetics

Unless otherwise noted, all material in this publication is protected by copyright by the Council for Responsible Genetics. All rights reserved. GeneWatch 31,1 0740-973

Ruth Hubbard • Jonathan King • Sheldon Krimsky Philip Bereano • Stuart Newman • Claire Nader • Liebe Cavalieri Barbara Rosenberg • Anthony Mazzocchi • Susan Wright Colin Gracey • Martha Herbert • Terri Goldberg

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4 In Memoriam: Abby Lippman 6 Genomic Testing Among African Americans: Problems, Limitations, and Solutions Current DNA ancestry tests provide a good deal of information about European ancestry – and not much about the rest of the world. By Fatimah L. C. Jackson 9 Ancestry DNA Testing: Who Could Track You and Your Relatives? When you send your DNA to an ancestry testing company, they might not be the only ones looking at it. By Helen Wallace 11 The Evolving State of Human Germline Editing The public conversation around human germline editing has significantly changed over the past few years. By Katie Hasson 14 Genes in Flatland Book review: Making Sense of Genes by Kostas Kampourakis. By Stuart A. Newman 16 Film Review: A Dangerous Idea Review of the film A Dangerous Idea: Eugenics, Genetics and the American Dream. By Jaydee Hanson 18 Letter: Gene Drive and Trust in Science Lobbying and propaganda around gene drive technologies threaten to erode public trust in science. By Christophe BoÍte

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In Memoriam: Abby Lippman By Sheldon Krimsky

One cannot encounter the prolific writings of Abby Lippman, who passed away unexpectedly after a fall on December 26, 2017 at age 78, without recognizing that she applied her analytical mind and her deep understanding of public health and medical policies in order to question institutional authority. Abby always showed us what we were missing in the road less traveled. She questioned the widespread use of HPV vaccines until the benefits and risks were fully addressed. She warned against aggressive genetic screening that would eliminate all children with disabilities, who would otherwise make notable social contributions and provide immeasurable love to a family. She railed against making assisted reproduction, including egg donation, a commercial activity only available to those with means. And she opposed the use of induced pluripotent stem cells (IPS) to develop gametes, shortcutting human evolution with unknown consequences. Genetic reductionism (geneticization), she wrote, trivialized the complexity of disease and that medical and reproductive technologies were not intrinsically good. Abby was born in Brooklyn in 1939. After attending Erasmus High School and Cornell University, she earned her doctorate in human genetics. She gained an appointment as professor in McGill’s Department of Epidemiology, Biostatistics 4 GeneWatch

and Occupational Health. She spent half of her life living in Montreal as a naturalized Francophile and carried her penchant for social activism, cultivated in New York during the 1960s, to Canada and amplified throughout the world. The McGill Reporter wrote: “Abby Lippman was

a formidable presence in Montreal. When seen strolling down Sherbrooke Street, she was a force to be reckoned with.” As a professor of Epidemiology, Biostatistics and Occupational Health, Abby’s unit of analysis was populations and social systems. Data mattered but so did ethics and social justice. She was widely sought after by patient and women’s advocacy groups as an independent voice they

could trust. She was a core member and frequent contributor to Biojest, a list serve dedicated to public accountability and human rights in relation to the safety, evaluation, approval, and marketing of therapeutic products. Abby served on the advisory committee of the Council for Responsible Genetics (CRG) and contributed policy statements and essays in GeneWatch. Stuart Newman, professor of cell biology and anatomy at New York Medical College who co-authored articles, position papers and letters with Abby, said: “As a member of the Advisory Board of CRG she was a principal formulator of its 1993 position paper against human germ-line modification, the first such statement by a secular public interest group.” Abby’s writings included many letters to journals and newspapers, in response to stories that shortchanged critical issues. Her New York Times letters addressed: the morality of cloning embryos; osteoporosis drug risks; creating embryos for research; breast cancer gene does not cause disease, and the patriarchal interpretations of pregnancy. At a time in history when women’s voices are shaking the foundations of patriarchy, Abby Lippman will be remembered for carrying the torch of feminist approaches to science and the reproductive rights of women. nnn

Jan-Jul 2018

From the Council for Responsible Genetics

AVAILABLE AT Volume 31 Number 1

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Genomic Testing Among African Americans: Problems, Limitations, and Solutions Current DNA ancestry tests provide a good deal of information about European ancestry – and not much about the rest of the world. By Fatimah L. C. Jackson The acceptability and feasibility of regular genomic testing has reached the American consumer, and the public is largely receptive. Bolstered by exaggerated and futuristic portrayals of genomic testing in the popular media, actual genomic testing currently falls short in its utility to identify and act on most disease susceptibility genes or accurately elucidate deep ancestry. Although such tests are highly accessible, they remain interpretively problematic for Americans of non-European biological lineages, lacking both the necessary historical context and the appropriate reference databases. As a result, the psychological benefits and physiological gains of genomic testing remain skewed towards clients of European ancestry and expressing European versions of certain diseases.

Interestingly, the European-identified genomic segments remain short, suggesting historic rather than recent admixture, the Africanidentified segments are elongated but limited to chromosome 5 and the X chromosomes. So the Africanidentified segments are recent, but this is incompatible with the 64% of this individual’s genome that remain geographically unassigned or has not been seen before. This genomic asynchrony begs the question of actual genomic origins; we clearly know a great deal about a small fraction of humanity (Europeans) and are not yet equipped to process the interaction of multiple continental sources that occur with increasing regularity in normal American genomes. Limitations: When the reference databases are

predominantly Eurocentric, so are the genomic priorities. This is expected and not problematic in and of itself, yet it does present issues when the client base is ethnically and geographically diverse and decidedly non-European. For example, the opportunity for quantifying one’s Neanderthal ancestry, an issue of interest for many European-descended individuals, appears to provide little incentive for genomic testing among many African Americans. Among many African descended individuals, Neanderthal ancestry levels are usually low to virtually non-existent and it appears that no significant introgression of Neanderthal genes occurred among continental Africans in modern human evolutionary history. Another issue for many Legacy African Americans — that is, African

Problems: For many non-Europeans, the results look like the case presented below in Figure 1 from a US-born American woman. The analytical results of this individual show huge swaths of her genome (64%) that are either unassigned to any geographical region or for which no data currently exists. In the case of this individual, more is known about her 20% European heritage than the 15.8% that can be confidently assigned to Sub-Saharan Africa. Of the African component, the majority is from West Africa. 6 GeneWatch

Figure 1. Geographical assignment of segments of specific chromosomes. Jan-Jul 2018

Americans who have been in the country for 11 to 16 generations and whose ancestors have experienced and contributed to the country’s development — is that more information is known about the smallest components of their genomes than is revealed about the larger, residual African components. This limits the value of genomic testing of these individuals and, since much of this admixture with Europeans occurred within the context of African American enslavement, the presence of European-based segments in the genomes of African Americans recalls a psychologically painful past. We have found this to be particularly evident among the estimated 30% of Legacy African American men who carry Y-chromosome haplogroups found more commonly in North Atlantic Europe. For more recent African Americans, the offspring of recent immigrants from continental Africa, current genomic testing is particularly non-illuminating. Results revealing that West African Americans are 99%

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African with no further stratification are predictable yet devoid of the nuanced regional and ethnic specificity that Americans of European origin have come to expect. If Africa was studied systematically, we expect it to yield as much, if not more, geospatial and ethnic complexity as Europe, particularly since humans have had a protracted residence in Africa and extensive migrations throughout the continent have occurred over hundreds of thousands of years. Among college students who are the first American generation of African immigrants, current genomic testing efforts are discouragingly non-informative. In our studies of genomic testing among Legacy African American college students, there is a consistently greater interest in genomic testing to reveal their patterns of African admixture. This is likely because Legacy African Americans are an amalgamation of West and Central African ethnic and regional groups with modest gene flow from specific non-African groups.1 Unfortunately, however, the

knowledge of intra-African genomic diversity remains lacking. For the majority of these African Americans, the more African their lineage, the less current genomic testing is able to reveal about their disease susceptibilities, ancestry, and phenotypic markers. In previous studies we have shown that personalized genomic testing can have multiple beneficial educational ramifications for African American college students, so in the absence of relevant information, these opportunities (to, for example, enhance interest in STEM) are diminished.2 Very limited genomic studies of indigenous Africans have been done and even fewer are publically available and integrated in general reference databases for comparative research purposes. Although the 1000 Genomes Project reconstructed the genomes of 2,504 individuals from 26 populations using a combination of low-coverage whole-genome sequencing, deep exome sequencing, and dense microarray genotyping, Africa was not adequately

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represented given its status as the homeland of our species, continent of longest residence, and therefore the indigenous peoples with the greatest expected collective accumulations of acquired mutations.3 Although the 1000 Genomes Project characterized a broad spectrum of genetic variation, in total over 88 million variants (84.7 million single nucleotide polymorphisms [SNPs], 3.6 million short insertions/deletions [indels], and 60,000 structural variants), all phased onto high-quality haplotypes, coverage of the non-European populations from whom many American lineages can be traced remains insufficient – particularly given the long presence of African-descended individuals in this hemisphere, the extensive opportunities for gene flow with non-Africans, and the continentally diverse origins of these early Africans to America. This was noted over twenty years ago, yet the deficiency in our databases persists.4 Solutions: How can we remediate this situation and bring parity to genomic testing? A first step is to increase the number of diverse non-European individuals in the reference databases, creating truly comprehensive and representative databases for meaningful world-wide comparisons. A particular need is to capture the high variability of indigenous African and tropical Asian and Amerindian groups since much of this genomic diversity is not yet characterized. This has to be done in an intentional fashion, not haphazardly or opportunistically. We need clear hypothesis-driven sampling strategies for studying genomic diversity in nonEuropean peoples and these need to be coupled with relevant historical and geospatial data. 8 GeneWatch

We need to identify the salient population substructure of American donors so that their genomics can be ecologically and historically contextualized. Using ethnogenetic layering, we have hypothesized that microethnic groups such as the Gullah/ Geechee of the South Carolina Lowcountry may retain unique genomic markers as a consequence of their relative geographic and cultural isolation compared to other more inland African American microethnic groups.5 Lumbee Native Americans of North and South Carolina may have different genomic profiles than Dene (Navajo) Native Americans of Arizona and New Mexico, not only because of the geographical distances between these groups, but also because of their differing population histories, migration stories, admixture patterns, dietary exposures, and other relevant variables. African Americans admixed historically with east coast Native Americans may have their Native American ancestry discounted since the reference standard is based on southwestern U.S. Native American peoples. At Howard University, we have launched the 1000 African Diaspora Genome Project in conjunction with research collaborators at Helix and National Geographic. Our aim is to provide historically-informed, geospatially diverse sampling to the study of African-descended peoples in the Americas. To this we hope to embrace a 10,000 African Genomes Project to more effectively capture the magnitude of genomic variability in the homeland of humanity. The third phase of this series is the 1000 Red Sea African Diaspora Genome Project which seeks to trace the migration pathways of Africandescended groups eastward across the Red Sea and Indian Ocean. Once completed, these databases will

provide the scientific community with greater referencing depth with expected positive ramifications for a public increasingly interested in and dependent upon the results of genomic interpretations. nnn Fatimah L. C. Jackson, Ph.D., is a Professor of Biology and Director of the W. Montague Cobb Research Laboratory at Howard University. (fatimah.jackson@ Endnotes 1. Jackson FLC and Borgelin LFJ 2010 How Genetics Can Provide Detail to the Transatlantic African Diaspora IN The African Diaspora, Edited by Tejumola Olaniyan and James H. Sweet, Indiana University Press, pp. 25-75. 2. Johnson J and Jackson F 2015 Use of multiple intelligence modalities to convey genetic and genomic concepts in African American college biology students.Natural Sciences 7(6):299308. doi: 10.4236/ns.2015.76033 3. The 1000 Genomes Project Consortium. 2015 A global reference for human genetic variation. Nature 526: 68–74 (01 October 2015) doi:10.1038/nature15393 4. Jackson, F.L.C. 1997a Assessing the Human Genome Project: An African American and Bioanthropological Critique. IN Plain Talk about the Human Genome Project, E. Smith and W. Sapp, eds., Tuskegee University: Tuskegee, AL, pp. 95-103. Jackson, F.L.C. 1997b Concerns and priorities in genetic studies: Insights from recent African American biohistory. Seton Hall Law Review, 27(3): 951-970. Jackson, F.L.C. 1998 Scientific limitations and ethical ramifications of a nonrepresentative Human Genome Project: African American responses. Science and Engineering Ethics 4:155-170. 5. Jackson, FLC 2008 Ethnogenetic Layering (EL): An alternative to the traditional race model in human variation and health disparity studies. Annals of Human Biology Mar-Apr 35(2):121-144.

Jan-Jul 2018

Ancestry DNA Testing: Who Could Track You and Your Relatives? When you send your DNA to an ancestry testing company, they might not be the only ones looking at it. By Helen Wallace

If you send your DNA to a company to test it and provide you with information on your ancestry, could this information ever be used in ways that harm you or your family? The short answer: Yes. Your DNA acts like a genetic fingerprint which can be used to identify you and members of your family. If your genetic information is stored on a database alongside your personal details, anyone with access to that database could track you down using your DNA. For example, by collecting your DNA from a coffee cup, sequencing it, and matching the genetic information it contains to that stored on the computer database, someone could find out your name and where you lived. Because half your DNA comes from your mother and half from your father, DNA can also be used to identify your biological relatives, including your parents, siblings, children and cousins. This means that anyone who can track you down can also find your children. Or, if you are not in a DNA database, you might be tracked down via a relative whose DNA is in a database. DNA can also reveal non-paternity, sometimes exposing family secrets that have been kept for a Volume 31 Number 1

lifetime or even several generations. Revealing such secrets is sometimes beneficial, but it can also drive families apart, and perhaps expose women to domestic violence. In some countries, sex outside marriage is illegal and revealing non-paternity can lead to the mother’s imprisonment or even death. For all these reasons, it is widely agreed that genetic information is personal and private. So, how safe is it when you send it to a private company? There are four primary issues here. Firstly, what are the company’s policies on privacy, are those policies legally enforceable, and can you really

trust them? Secondly, could the police, security services or others lawfully obtain your genetic information from the company as part of a criminal investigation? Thirdly, how easy is it for someone to access your genetic information unlawfully or deduce your identity even when they are not supposed to? And finally, what are the implications for your family when you decide to use a genetic testing service? Genetic testing companies’ privacy policies vary widely and few people read the small print. In some cases they will allow samples to be stored and genetic information to be shared with third parties.1,2 Unforeseen circumstances, such as bankruptcy, can introduce additional uncertainty about where samples and data might end up. However, even if we accept that such databases are meant to be secure, this doesn’t mean they can’t be used to identify you or track down members of your family. There are already examples of genetic ancestry data being used by law enforcement in the U.S. Although commercial companies often refuse police requests, aware that they may not GeneWatch 9

be popular with customers, the police may not always be open about their use of such databases, or may obtain a warrant to access information. In the summer of 2014, the Idaho Falls Police Department obtained a warrant to seize genetic information from in connection with a 1996 rape and murder. According to press reports, the police sent the crime scene DNA sample to and the company emailed them the results of a close but not exact match, without naming anyone in the company’s database.3 Police then obtained a warrant to force the company to turn over the donor’s name. This individual, Michael Usry Sr., had donated his DNA to a nonprofit scientific organization conducting genetic research, which was later bought up by As a result of the partial match, his son, Michael Usry Jr., who was of about the right age and had connections to the Idaho Falls area, was believed to be a suspect by the police. They got a warrant for collection of his DNA and interrogated him for six hours. He remained under suspicion for a month, until his DNA was found not to match the samples taken from the crime scene. In a more recent case, police arrested a suspect in the so-called Golden State killings, who they identified using genealogy databases.4 The police used a public site called GEDmatch, where members can upload their family tree DNA results from any commercial company. Police set up a fake account and uploaded the crime scene DNA to obtain partial matches. Reportedly, 10-20 distant relatives (third cousins) were identified and the police then used those relatives’ genetic profiles to construct 25 distinct family trees in an graphing tool.5 They relied on other publicly available data sources, and 10 GeneWatch

information about the crimes (such as their location and the likely age of the suspect) to narrow the suspects down to two. They eliminated one through the DNA test of a relative and confirmed the suspect through analysis of DNA on an item he had discarded. Whilst some people were simply glad that a suspect was identified, others were concerned about the broader implications. Could police track down any individual simply through their DNA? What if errors in crime scene examination or the lab led to misidentification (as has happened in past cases using police forensic databases)? What if a surveillance state misused such databases, not to track down criminals, but to identify political dissidents (tracked through DNA left on coffee cups at a political meeting, for example)? This method of deductive identification could also be used by people other than the police. Criminal gangs trying to identify a witness who is in hiding, or an abuser trying to track down his own wife or child, are examples of people who might try to do so. They could use stolen DNA (from a toothbrush or piece of chewing gum, for example, or taken by force from a relative) or even their own DNA (if they are trying to track down a relative) to submit to a commercial service or online database, looking for a partial match. Are you now hesitating about sending your DNA for genetic testing? Unfortunately, your own privacy also depends on what your relatives decide to do. Australian experts recently warned: “The use of forensic genealogy brings us closer to a point where it may be possible – given enough data and resources – to identify any genetic sample.”6 It is particularly important to think about the impact of these “genetic services”

on children and future generations. How will they feel if they can all be identified and tracked, using a DNA surveillance system inadvertently created by their parents? In our curiosity about genetic relatives from the past, will we jeopardize our living and future relatives – and ourselves? nnn Helen Wallace, PhD, is Director of GeneWatch UK. Endnotes 1. Christofides E, O’Doherty K (2016). Company disclosure and consumer perceptions of the privacy implications of direct-to-consumer genetic testing. New Genetics and Society, 35(2), 101–123. .1080/14636778.2016.1162092 2. Niemiec E, Howard HC, 2016. Ethical issues in consumer genome sequencing: Use of consumers’ samples and data. Applied & Translational Genomics, 8, 23–30. https://doi. org/10.1016/j.atg.2016.01.005 3. Ancestory firms’ DNA database use suspect. The Clarion-Ledger. 27th March 2016. story/news/2016/03/27/ancestory-firmsdna-database-use-suspect/82329306/ 4. The Golden State Killer Is Tracked Through a Thicket of DNA, and Experts Shudder. New York Times. 27th April 2018. https://www.nytimes. com/2018/04/27/health/dna-privacygolden-state-killer-genealogy.html 5. Graphing the sensitive boundary between personally identifiable information and publicly inferable insights. SiliconANGLE. 1st May 2018. https:// graphing-sensitive-boundarypersonally-identifiable-informationpublicly-inferable-insights/ 6. Scudder N, McNevin D (2018) Is your genome really your own? The public and forensic value of DNA. The Conversation. May 1, 2018. is-your-genome-really-your-own-thepublic-and-forensic-value-of-dna-95786

Jan-Jul 2018

The Evolving State of Human Germline Editing The public conversation around human germline editing has significantly changed over the past few years. By Katie Hasson

A wave of controversy about reproductive gene editing gathered force in response to reports in 2015 of the first CRISPR experiments on human embryos. That news provoked two kinds of reactions: on the one hand, hyperbolic claims about “editing humanity” and the new ability to “engineer the human race”; on the other, deep concern, calls for moratoria (if not outright prohibition), and reaffirmations of national and international prohibitions of germline modification. The tone has shifted considerably since then. While grandiose ambitions for reproductive germline editing can still be heard, some proponents seem to be playing them down, perhaps in an effort to calm public concern. Yet media coverage of recent embryo editing studies has been largely celebratory. Very few scientists have been openly critical, and calls to “reconsider” some of the longstanding global consensus documents prohibiting germline editing are gaining steam. One notable aspect of the current debate on reproductive germline editing is the widespread recognition that decisions about it can’t be made by the small professional bodes and expert committees that have dominated the conversation up to this point. Most participants have called for “broad societal consensus,” “public participation,” or the like. Volume 31 Number 1

Recently, several new groups have proposed concrete ideas for public engagement. This article summarizes recent technical and policy developments regarding human germline editing, with a focus on assessing the conversation about the conversation – that is, asking whether the proposals for public discussion are sufficient to encouraging meaningful public engagement and empowerment. Technical developments In 2017, four papers on human embryo editing were published, bringing the total up to six. This included the first experiments on viable human embryos from a lab in China,1 the first embryo editing work in the US by Shoukrat Mitalipov at Oregon Health and Sciences University,2 and the first publication from Kathy Niakan’s research in the UK.3 Mitalipov’s research, in particular, received heavy and mostly laudatory media attention, in part because it was the first embryo editing research reported in the U.S. and in part because he claimed to have accomplished high rates of success with almost no off-target effects or mosaicism. However, prominent scientists in the field raised serious doubts about his research claims that he has not answered to date, and subsequent research findings seem to support their critiques.4 The celebratory headlines and

media hype were striking and disturbing, particularly in comparison with the coverage from just a few years ago.5 In fact, in early 2018 another embryo editing study was published and received no media attention at all.6 Strangely, this normalization of embryo research is happening even as we see the publication of more and more studies showing that CRISPR has serious limitations in terms of efficacy and accuracy and carries significant risks for use in humans. For example, recent research shows that CRISPR’s on-target effects may be less accurate than believed, resulting in a sort of “genome vandalism” with potentially risky results.7 It’s too soon to know how much of a barrier these technical challenges will turn out to be, but they make clear that it is far too soon to consider gene editing “safe.” Policy developments Also new over the past 18 months are several significant policy reports and position statements. Both the U.S. National Academies of Sciences, Engineering, and Medicine and the UK’s Nuffield Council on Bioethics released the human gene editing reports they had been working on for the past several years. The NAS report, published in February 2017, recommended moving to clinical trials with human germline gene editing in certain limited circumstances.8 Limitations GeneWatch 11

notwithstanding, this represented a radical and dangerous departure from the long-standing international consensus that interventions in the human germline should remain off limits.9 It also constituted a reversal of the recommendation that the NAS itself made just over a year earlier, that moving forward with this technique in humans would be irresponsible without first establishing a “broad societal consensus.”10 Last year was also the 20th anniversary of the Council of Europe’s Oviedo Convention, a binding international treaty that includes a prohibition of heritable human genetic modification. The anniversary prompted calls for remaining countries to ratify Oviedo as well as individual calls to revisit or revoke its prohibition of heritable genetic modification.11 The Nuffield Council report, released just this month, arguably goes further than any previous advisory body in endorsing the use of reproductive germline modification.12 The report concludes that reproductive germline editing for any purpose could be “morally permissible” as long as it is in the future child’s best interest and does not increase societal inequality or discrimination. Notably, Nuffield dispensed with the common arguments (embraced by NAS) that germline gene editing could be considered “therapeutic,” that the line between therapy and enhancement could be clearly determined, or that there is a significant distinction to be made between basic and clinical research. While for most observers these accurate assessments suggest the need for great caution if not outright prohibition, the Nuffield report concluded otherwise. The clarity of these points makes its permissive recommendations even more distressing. 12 GeneWatch

New calls for public engagement But there are also some promising developments on the horizon, as groups and individuals put sustained thought into how we might develop and facilitate the kinds of public participation that could generate broad societal consensus on the question of reproductive gene editing. Even the Nuffield Council report calls for developing an “independent body… to promote and coordinate societal debate on genome editing.”13 What these efforts have in common is their recognition that getting to broad societal consensus will require committing significant financial and institutional resources to developing and facilitating meaningful public participation. The Association for Responsible Research and Innovation in Gene

Editing (ARRIGE) launched in March 2018 and currently has over 400 members.14 Their stated aim is to promote global governance of genome editing with input from a wide range of stakeholders (academics, private companies, patient organizations, citizens, decision makers). Thus far they exist mostly online, and it’s unclear what shape the organization will assume or what kinds of positions they might take. The enthusiastic support for human germline editing among a few of the founders suggests a pro-germline stance. Calls to revisit Oviedo and other international bans that were made in an earlier, pre-launch paper by the group’s founders also support this view.15 However, subsequent discussions taking place in the group reveal that these views are not universally held. Around the same time, another group of scholars and scientists,

Jan-Jul 2018

organized by Sheila Jasanoff and Benjamin Hurlbut, put forth a proposal for a “Global Observatory” for gene editing.16 The main function of the proposed observatory would be “to expand the range of questions that need to be addressed by making visible the diversity of moral perspectives represented within the global human community.” They are not proposing to give specific advice on whether or how to proceed with particular uses of gene editing, but rather to outline what it would take to achieve a truly “broad societal consensus.” This would begin with involving the broadest possible range of participants and perspectives, as well as providing infrastructure to facilitate the public deliberations that are necessary. Most importantly, they argue that the range of questions offered for public deliberation should not be constrained in advance – any attempt at societal consensus on germline gene editing ought to start with discussion of what is at stake and what questions need to be answered. As the authors point out, this will require ways of listening to and learning from a broad range of thinking about moral and social values, what they call a cosmopolitan ethic. One resource for doing this — which they unfortunately underemphasize — is the rich landscape of existing civil society organizations that already undertake concerted efforts to ensure social justice, human rights, and the public interest. Connecting the movements and missions that these organizations pursue to the stakes and questions surrounding gene editing should be a priority. The current moment What can we make of these opposing trends in the gene editing Volume 31 Number 1

conversation: seeming normalization in scientific and policy discussions, alongside intensified calls for engaging the public? And how can we ensure that debates about germline editing result in empowered public participation with meaningful results? Public deliberation can only be meaningful if we resist the move to make technical questions around safety and efficacy stand in for broader and deeper discussion about social and ethical values. Gene editing debates can’t remain a closed loop among small groups of scientists and bioethics professionals.17 We’ve already seen instances in which scientists who are eager to move germline editing into the clinic see the NAS report as providing ethical cover for their work. Meaningful public engagement requires (at the very least) a pause in efforts to pursue germline editing to prevent rogue or overeager scientists from making this fateful decision for the rest of humanity. nnn Katie Hasson, PhD, is Program Director on Genetic Justice at the Center for Genetics and Society.

Endnotes 1. article/10.1007%2Fs00438-017-1299-z 2. articles/nature23305 3.; 4. biorxiv/early/2017/08/28/181255.full. pdf; doubts-raised-about-crispr-gene-editingstudy-in-human-embryos-1.22547 5. biopolitical-times/7-questionable-claimsreporting-gene-editing-human-embryos; biopolitical-times/embryos-and-spin

6. DOI 10.1002/mrd.22983 7.; https://www.; https://www.statnews. com/2018/07/17/crispr-study-stocks/ 8. human-genome-editing-scienceethics-and-governance 9. https://www.openglobalrights. org/reproductive-gene-editingimperils-universal-human-rights/ 10. Lowthorp, Leah and Marcy Darnovsky. 2017. Reproductive genome editing and the U.S. National Academies Report: knocking on a closed door or throwing it wide open? Bioethica Forum10(2); biopolitical-times/opening-doorgenetically-engineered-future-generations-how-nas-report-ignores 11. aspx?doc=aHR0cDovL2Fzc2VtYmx5Lm NvZS5pbnQvbncveG1sL1hSZWYvWD JILURXLWV4dHIuYXNwP2ZpbGVpZ D0yNDIyOCZsYW5nPUVO&xsl=aHR0 cDovL3NlbWFudGljcGFjZS5uZXQvW HNsdC9QZGYvWFJlZi1XRC1BVC1YT UwyUERGLnhzbA==&xsltparams=Zm lsZWlkPTI0MjI4 ; cgs-oviedo-conventions-20th-anniversary 12. genome-editing-human-reproduction 13. uploads/Genome-editing-and-humanreproduction-short-guide-website.pdf 14.; mon; news/2018/03/interested-responsiblegene-editing-join-new-club 15. article/10.1007%2Fs11248-017-0028-z 16. d41586-018-03270-w; https://www.; https:// article/pii/S0167779918301215 17. http://www.zocalopublicsquare. org/2018/01/17/designerdna-isnt-just-designer-babies/ ideas/essay/

GeneWatch 13

Genes in Flatland Book review: Making Sense of Genes by Kostas Kampourakis. By Stuart A. Newman

Making Sense of Genes by Kostas Kampourakis, Cambridge University Press, 2017, 314 pp. DOI: 10.1017/9781316422939 **** Making Sense of Genes is an elegantly written book containing many refreshing insights about how the notion of the gene was developed in the late 19th century and how it is used and misused today. It has deservedly garnered several appreciative reviews noting its conceptual range and lucid descriptions of current research findings. Rather than depending on facile metaphors for gene function (“blueprints,” “programs”) like most other popular treatments of biology, the author, Kostas Kampourakis, deftly deconstructs them, showing why they have been adopted, but how they mislead. He convincingly shows that while the notion that there are genes “for” specific characters, such as height or aggressive behavior, is based on multiple misconceptions, the idea of genes “for” some diseases, including metabolic disorders and cancers, may have some merit, even though strict causation is rarely straightforward. Something seems off-kilter, however, as the author navigates the worlds of biology and medicine, where genes remain the perennial touchstones, with what seems to be a vertiginous grasp on the notion. There is the “classical” gene of early breeders and hereditarians, the cytological gene of the 14 GeneWatch

early 20th century, and the molecular gene from the 1950s on. It becomes very clear that these are not all the same thing. Kampourakis even winds up questioning whether the concept of the gene has any continuing relevance in the modern discourse of epigenetic modifications of DNA, alternative splicing of messenger RNAs, and conditional regulatory elements. Not mentioned, though consistent with his other examples, is the wide prevalence of intrinsic disorder of proteins, by which a given gene product takes on different structures and functions in different tissues or at different stages of development. This last phenomenon might be the real deal-breaker for the idea of genes, and ultimate reason that full sense cannot be made of them. The book’s treatment is thus all too reminiscent of the 1884 novella Flatland, by E. A. Abbott, in which the narrator, A Square, inhabits a two-dimensional world. An encounter with A Sphere, who intersects and passes through Flatland, turns Square into

an evangelist for the existence of Spaceland against the skepticism of his polygonal compatriots. The latter, nonetheless, have no trouble seeing through the cluelessness of the “points” who live in Lineland. Analogously, while a perceptive guide, like Kampourakis, can gesture at the inadequacy of understanding organisms via genes or their associated molecules, he cannot really explain why, or how to do better, without expanding the terms of reference. Dimensions are missing from Kampourakis’s narrative, but what are they? A major one is evolution. The author has written an entire book on the subject (Understanding Evolution, Cambridge, 2014), but it barely makes an appearance in this one. The roles of inheritable molecules in a present-day organism cannot be understood disconnected from the roles they had in the organism’s ancestors. An interesting section of the book is devoted to the puzzling phenomena of gene “knockouts,” experimental or naturally occurring

Sketch from Flatland (1884) by E.A. Abbott Jan-Jul 2018

animals in which a gene that in most members of a population might be essential and fatal if lost, is absent in an individual or family, but with no adverse consequence. In one recent study (not discussed, but similar to ones that are), a woman was identified with a nonfunctional version of a gene whose protein product is essential for cutting and pasting chromosomes following fertilization. While she was fertile (unlike mice that lack this gene) and had a healthy child, the child’s chromosome break points were atypical. This indicates that gene products not normally involved in the recombination process have taken it on, but perform it differently. In discussing such phenomena Kampourakis correctly notes that no character or function is dependent on just one gene and that others can often take over when a key one is absent, thus concluding that “the gene-character relation can be very difficult to understand” (p. 168). But without an evolutionary perspective one can miss the fact that a given gene can be required for the origination of an essential function, with further evolution serving to protect and reinforce the function by integrating other genes to its realization. In some cases, the originating gene can even be sidelined. The fact that a gene’s significance can change over its evolutionary trajectory (something that has been termed “developmental system drift”) is a critical aspect of making sense of that gene. This is particularly relevant for understanding morphological characters, body parts of specific shapes and forms in animals and plants that were the main interest of both Charles Darwin and Gregor Mendel. Here the missing dimension in Kampourakis’s discussion of genetics (in common with just about all other treatments), is consideration of the Volume 31 Number 1

material properties of developing tissues. The author has helpful things to say about the multilevel causation of embryonic development, stating, for example, that “most distortions and misunderstandings of how genetic inheritance takes place have occurred because of the failure to take developmental processes into account” (p. 189). But in contrast to his general contention that gene variants or conditional activity function as enigmatic “difference makers” in impenetrably complex developmental systems, the products of some genes can in fact directly cause forms to appear in a fashion that is mechanistically straightforward. They do so by mobilizing physical forces and effects (cell-cell adhesion, molecular diffusion, tissue phase separation, and so forth) to cause embryos to form multiple layers, interior spaces, segments, appendages, buds, and branches. While genes and their products can have large effects (as the author describes) by tipping the balance in a complex stew of causation, sometimes, in concert with physics, they can act as prime movers in developmental or evolutionary transitions. From the evidence in this book, the gene has been such an unstable and mutable notion in the century and a half since it was first advanced that one wonders whether its survival was due to its fitness as scientific concept, or if there were extraneous reasons. Plant and animal breeding were performed for thousands of years before the gene concept arose, providing us with virtually all the currently used domesticated varieties. The concept’s relevance to research has been waning for some time: molecular biology has been increasingly stymied by attempts to express its findings in terms of the gene, and the elucidation of the roles of DNA and RNA in

protein synthesis over the last seven decades could almost certainly have occurred without the notion. And finally, as the book describes, there are other modes of inheritance and heritable change than DNA. I suggest that persistence of the gene idea owes a lot to its social roles. It has aided elites in dividing out-groups from one another through “scientific” racism and sexism, in separating indigenous and other traditional farmers from their agricultural resources via forced dependence on fertilizers and herbicides, and by patents, among other appropriative applications of DNAbased technologies. Kampourakis, to his credit, notes the eugenicist motivations of early hereditarians and their 20th century successors, but does not carry this part of the story to the present, including the current proposals by commercially connected academics to engineer future generations of people by CRISPR technology. Subsequent efforts at making sense of genes would benefit from incorporating these normally buried ideological and social dimensions in the historical and scientific narratives. nnn Stuart A. Newman, PhD, a founding member of the Council for Responsible Genetics, is a professor of cell biology and anatomy at New York Medical College and editor of the journal Biological Theory.

GeneWatch 15

Film Review: A Dangerous Idea Review of the film A Dangerous Idea: Eugenics, Genetics and the American Dream. By Jaydee Hanson

A Dangerous Idea: Eugenics, Genetics and the American Dream is a powerful new movie that explores how the idea of eugenics, first explored in the 1800s by Charles Darwin and his cousin, Francis Galton, gained new energy in the 20th Century. The myth that an all-powerful gene predetermines the worth of an individual became genetic determinism, and states from Virginia to California used this myth as a justification for state sanctioned crimes against their poorest and most vulnerable citizens, violating the civil rights of millions. Directed by Stephanie Welch and written by Ms. Welch and Andrew Kimbrell, this documentary interviews social thinkers like Van Jones and Robert Reich along with key genetic scientists who are critical of the way genetic science has been used to argue against equal rights for all people. A Dangerous Idea radically reassesses the meaning, use and misuse of gene science. This documentary shows how false scientific claims were used to fight against gains in equality for all people and how powerful interests are again using a false representation of genetic science to push back against gains in racial and gender justice. Once again, the “gene myth” is attacking the American dream of liberty and justice for all. While the film was completed before Donald Trump became the U.S. president, it is made timelier because 16 GeneWatch

A Dangerous Idea: Eugenics, Genetics and the American Dream, 106 minutes. Directed by Stephanie Welch, produced by Stephanie Welch, N. Jed Riffe; Executive Producers: Mary R. Morgan, Andrew Kimbrell, Writers: Stephanie Welch, Andrew Kimbrell. Available from Bullfrog Films, PO Box 149 Oley, PA 19547 $350 purchase, $95 to rent. Activist groups can request reduced purchase and rental rates.

of the Trump administration’s threat of a new biologically determined politics. Trump takes an almost social Darwinian view of immigrants, women, and people living in poverty. A Dangerous Idea attacks the false science that underpins Donald Trump’s complaint about too many people from [….hole] countries like Haiti wanting to come the U.S. and not enough from Norway. The great value of the film is that it critiques the new eugenics as a dangerous antidemocratic way of understanding human beings and society in the face of commonly accepted beliefs that genes determine destiny.

Ralph Nader, the political scientist and consumer advocate, calls the film “an effective dissection of the genetic determinist worldview, rising again in new garb and aided by the Trump Administration. This documentary provides a timely rebuttal to those who continue to embrace this dogma, and offers a critique that both Liberals and Conservatives can readily converge behind.” Barbara Katz Rothman, Professor of Sociology at City University of New York and author of The Book of Life: A Personal and Ethical Guide to Race, Normality and the Implications of the Human Genome Project, warns Jan-Jul 2018

us about the gene myth and endorses the film: “Yes, this is a dangerous idea — and if you want to better understand why, watch this film and see the history, development and presentation of this idea that there is a book of life, a program that determines, from the moment of conception, all that we are and can be. It is indeed one of the more dangerous ideas humans have come up with.” Stuart Newman, Professor of Cell Biology and Anatomy at New York Medical College and a founding member of the Council for Responsible Genetics, gives the film a strong endorsement: “An essential and engaging work that I would like to see on the curriculum of every high school, and played in every library, in the United States. It highlights a shameful side of our society, the devaluation of racial minorities and the poor with supportive pseudoscience, which was mainstream policy for

much of the nation’s history … These corrosive ideas, accompanied by newer, equally bad science, are now back in full force. This film has appeared at the right time to help turn back this poisonous tide.” The American Experience has always been about making the country more equal, not making it less equal. The false science of eugenics attempts to distort the American Dream with the false siren of inherent genetic inequality. This documentary reminds us that we need real political alignment to work together. It doesn’t mean we will agree about everything, but we need to trust each other and not sell out for the sake of expediency or by following this false science that underpins false political narratives. This means planning, organizing and fundraising in accordance with our principles and values. A Dangerous Idea makes the strong case that eugenics and its sloppy genetic science

have no place in our principles and values. nnn

is receiving less unfavorable attention. Editing an individual human’s genome also means editing the genomes of that person’s descendants, deliberately altering their genetic inheritance. This practice – commonly referred to as germline editing or germline engineering – has historically been prohibited around the globe due to serious ethical concerns. Some of these concerns relate to echoes of eugenics; as illustrated by the film A Dangerous Idea (reviewed in this issue), the past injustices of government-sponsored eugenics programs should still be a potent warning to us today.

Yet, Katie Hasson writes in this issue that the tone has shifted recently around human germline editing. Support for the practice may be gaining traction – four papers were published on human embryo editing in 2017 – but what happened to the public debate? DNA ancestry testing companies capitalize on our fascination with family histories; human germline engineering changes a family’s DNA forever. This issue looks at each of the subjects above and asks: Who does this really benefit? And more importantly, who does it harm? nnn

Jaydee Hanson is Policy Director for Human Genetics at the International Center for Technology Assessment. Mr. Hanson notes that Andrew Kimbrell, the writer and producer of this documentary, is his supervisor. The film has won top prizes for a documentary at the Santa Fe, NM and Savannah, GA Film Festivals. It has recently been shown at Howard University Law School in Washington DC and in Atlanta by Humanity in Action, in collaboration with National Center for Civil and Human Rights.

Editor’s Note continued from page 2

often providing the ability to contact them. If law enforcement officials have a DNA sample without a match in their databases, they can simply send it to one of these companies and create a profile of the unknown person – and, just as it did for your genealogy-obsessed uncle, the service will give law enforcement a report of any relatives who have used the same company. This is not just hypothetical; it is how police caught the Golden State Killer earlier this year, and several others since then. Another aspect of our DNA ancestry has fallen out of public conversation in recent years, or at least Volume 31 Number 1

GeneWatch 17

Letter: Gene Drive and Trust in Science Lobbying and propaganda around gene drive technologies threaten to erode public trust in science. By Christophe Boëte

In a recent paper, Emerson et al. present five principles for gene drive research that they argue should be adopted by its sponsors and supporters: 1) advancing quality science to promote the public good; 2) the promotion of stewardship, safety, and good governance principles; 3) transparency and accountability; 4) engaging thoughtfully with affected communities, stakeholders, and publics; and 5) fostering opportunities to strengthen capacity and education.1 Emerson et al. report that 13 organizations, including Bill & Melinda Gates Foundation and the U.S. Foundation for the National Institutes of Health (FNIH), have made a commitment to honor the five principles. It is commendable that the list of Guiding Principles for the sponsors and supporters of Gene Drive Research (GPGDR) has been developed. However, it must be noted that it is a voluntarily undertaken code of ethical and scientific conduct. It has no legal weight behind it and its signatories are not accountable to any public, government, or international body if they violate it. That lack of accountability became obvious with the release of a large number of documents and emails under a Freedom of Information Act (FOIA) request by Edward Hammond/Third World Network and in response to an Access to Information request filed in Canada by ETC Group. These emails and documents are available at Gene 18 GeneWatch

Drive Files (http://genedrivefiles. and they highlight the efforts by the Gates foundation and the FNIH to influence UN agencies’ support of gene drive research. While advocates of gene drive use could consider this as the coordination of scientists around a technology and its potential outcomes, this clearly reveals inconsistency between the public stance of these two powerful organizations and their private lobbying activities. For instance, in violation of the Principle of Transparency of the GPGDR, the FNIH has been working with Emerging Ag (a consulting firm providing communications and public affairs services that is funded by the Gates Foundation) to engage in ‘behind closed doors’ lobbying of UN agencies. The FNIH’s lobbying goal is to “fight back the gene drive moratorium proponents before the next Convention on Biological Diversity CBD meeting in 2018” (see the 28 March 2017 email from the current Science Director of the FNIH to several scientists).2 Needless to say, it is very troubling that two key signatories of the GPGDR were engaged in coordinated ‘behind closed doors’ efforts to influence UN agencies. Their covert efforts seem to aim at thwarting the democratic will of various organizations that have called for a moratorium on gene drive research and use (http:// gene-drives-moratorium).

Such covert activities are likely to suggest to the public that funders and supporters of gene drive research are not interested in genuine public engagement or respectful of democratic decision-making, but mainly committed to securing the public’s consent for their agenda. FNIH is already collaborating with the New Partnership for Africa’s Development (NEPAD) and the International Life Sciences Institute (ILSI) to organize workshops about gene drive communication in Africa.3 This coordination is likely to reinforce that negative impression and calls into question its commitment to the GPGDR. ISLI’s history is indeed loaded with conflicts of interest at the EU level and it has financial links with companies that are interested in gene drive for crop or pest control in agriculture.4 Moreover, since 2006 the World Health Organization has banned ILSI’s from direct involvement in its activities.5 It is unclear if within the community of sponsors and supporters of gene drive research GPGDR has credibility. Furthermore, the largest financial supporters of gene drive research, the Defense Advanced Research Projects Agency (DARPA) and Target Malaria (the most important consortium developing gene drive for the control of malaria vectors in Africa) are not signatories of the document. Concerning DARPA, one might fear that its role of financial investor in Jan-Jul 2018

gene file could also mean a worrying limitation of freedom in the flow of information released by scientists as revealed in a note from the gene drive files where “DARPA would like to vet our script to the press before it goes to press.” Target Malaria is at the forefront of research and communication about gene drive. It was even involved in a series of workshops organized by the FNIH and the WHO in order to elaborate recommendations for the “Pathway to Deployment of Gene Drive Mosquitoes as a Promising Tool for Elimination of Malaria in Sub-Saharan Africa.”[6] During these, the scientific panelists were required to provide their opinion about the use of gene drive mosquitoes as a public health tool based solely on evidence-based science. Given the revelations about the ‘closed door’ lobbying by FNIH, now the public and members of the larger scientific community have legitimate reasons for worrying that some of the scientists at the workshop may have been involved in or influenced by FNIH’s covert agenda. In fact, even if there was no impropriety, the FNIH’s involvement in the workshop may have created the appearance of bias in favor of gene drives. So, several important questions must be asked: How much has public trust in science been eroded by these efforts to ensure that gene drive research continues? How can scientists and the publics debate the soundness of gene drive use? How can scientists build public trust when key institutional actors are intent on ensuring that gene drive research will continue? Clearly, it is time for UN agencies to organize a debate with independent, uninfluenced, honest and transparent partners who are willing to provide their honest appraisal of the technology and disclose any conflicts of interest and who have not Volume 31 Number 1

participated in any covert lobbying efforts to influence public opinion. nnn Christophe Boëte, PhD, is a research scientist at the Institut des Sciences de l’Evolution (ISEM), CNRS-IRD-Université de Montpellier-EPHE, in Montpellier, France. Endnotes 1. Emerson, C. et al. (2017) Principles for gene drive research. Science. 358 (6367), pp. 1135-1136 DOI: 10.1126/science.aap9026 2. Footnote 5 at: gates_foundation_pr/. Obtained by Edward Hammond / Third World Network from North Carolina State University by North Carolina Public Records Law request of 7 August 2017. 3. ILSI Research Foundation (2016) Environmental risk assessment of gene drives. http://ilsirf. org/what-we-do/genedrives/ 4. Boëte, C. (2018) Public engagement and communication: who is in charge? EMBO rep, 19: 1–2. doi:10.15252/embr.201745379 5. Heilprin, J. (2006) WHO to rely less on U.S. research. Washington DC: Associated Press. 6. James, S et al. (2018) Pathway to deployment of gene drive mosquitoes as a potential biocontrol tool for elimination of malaria in Sub-Saharan Africa: Recommendations of a scientific working group. The American Journal of Tropical Medicine and Hygiene, 98 (6)_Suppl, 1 – 49. DOI: 10.4269/ajtmh.18-0083

Stem Cell Dialogues

A Philosophical and Scientific Inquiry Into Medical Frontiers By Sheldon Krimsky “Stem cells” have become linked with both new frontiers in medical science and political and ethical controversy. Addressing the moral and ethical issues of stem cell research while also educating readers about the biological function and medical applications of these cells, this book features fictional characters engaging in compelling inquiry and debate. Educational, entertaining, and rigorously researched, Stem Cell Dialogues should be included in any effort to help the public understand the science, ethics, and policy concerns of this promising field. “Krimsky’s use of the dialogue method identifies, sharpens and advances both key points of debate and the breadth of issues being addressed.” — Ronald M. Green, Dartmouth College AVAILABLE NOW from Columbia University Press

GeneWatch 19

Council for Responsible Genetics

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