Genome Ethics, Law & Policy
SSJCScience and Society Journal Club
**NEW to Journal Club for Spring 2012!! SSCJ is now offering FREE pizza and refreshments for attendees, to accompany the discussion about science and society issues!!**
The Duke Institute for Genome Sciences & Policy (IGSP) journal club examines the relationship between science & society. It provides a forum for Duke staff, undergraduates, graduate students, postdocs, and faculty members to freely discuss and share opinions on issues at the intersection of science and policymaking. It also offers a venue for graduate students in scientific programs considering careers in law, ethics, policy, or similar fields to develop their interests by thinking about current issues and identifying future avenues for development.
Coordinators: Subhashini Chandrasekharan and Kathryn Maxson
The Spring 2012 series of SSJC will begin in February 2012. The schedule is below. Speaker names and tentative topics are to be announced soon. Unless otherwise indicated, the Journal Club will take place on the third Friday of each month, from 11:30am-12:30pm, in 100 North Bldg. Please note that this is a different location from previous semesters.
2/17/2012 Subhashini Chandrasekharan
Topic: Noninvasive Prenatal Genetic Testing: Does Clinical Translation Face New Challenges?
Speaker Bio: Subhashini (Shubha) Chandrasekharan, Ph.D., is a Senior Research Associate at the IGSP. Her current research includes empirical studies of intellectual property on innovation and access to genetic/genomic technologies, including noninvasive prenatal genetic diagnostics. In 2009, Shubha was awarded an R03 grant by the National Human Genome Research Institute (NHGRI) to examine whether, and to what extent, patents will impact the development of emerging genomic diagnostics and clinical whole genome sequencing services. Her broad research interests include ethical, legal and social issues surrounding proprietary protection and commercialization of biomedical technologies, and particularly the effects of intellectual property on innovation and access to biomedical products and services. She is also studying how IP and commercialization can influence access to biomedical products such as childhood vaccines in developing countries. Shubha has been actively involved in both mentoring students and ethics training activities, and is one of the coordinators of the IGSP Science and Society Journal Club.
Readings:
Greely, HT. (2011). Get ready for the flood of fetal gene screening. Nature 269(20 Jan 2011): 289-291. Available to members of the Duke University community here.
Supplementary Readings and Resources
CommonHealth, Reform and Reality: an informative website on relevant issues
Benn, PA & Chapman, AR. (2009). Practical and Ethical Considerations of Noninvasive Prenatal Diagnosis. JAMA 301(20): 2154-2156. Available to members of the Duke University community here.
deJong, A, et al. (2010). Non-invasive prenatal testing: ethical issues explored. European Journal of Human Genetics 18: 272-277. Available to members of the Duke University community here.
3/16/2012 Discussion of "alternative scientific careers"
Topic: Non-laboratory career paths for the scientifically-minded
Panel description: Interested in science but not sure that a career in the laboratory is for you? Join us at this special meeting of the SSJC to discuss non-laboratory careers for those interested in science and scientific issues. Attendees to the SSJC will include individuals pursuing career paths in fields at the intersection of science and policy, law, ethics, history, and more. Join us for a friendly discussion of the possibilites for "alternative" careers in science!
Readings: None.
4/20/2012 Speaker TBA
5/18/2012 Speaker TBA
6/15/2012 Speaker TBA
If you are interested in running a Journal Club meeting during either the Spring or Fall of 2012, please contact one of the coordinators via email. The Science and Society Journal Club welcomes session leaders of all ages and disciplines.
Past Meetings of Science and Society Journal Club
Below please find an archive of past meetings of the Science and Society Journal Club.
Fall 2011 Meetings
12/16/2011 Rachel Mills
Topic: Role of Genetic Counselors in Direct-to-Consumer Genetic Testing
Speaker Bio: Rachel Mills is a Clinical Research Coordinator in the IGSP who works with Dr. Susanne Haga. Rachel is a also Certified Genetic Counselor and completed her Masters in Genetic Counseling at UNC-Greensboro in 2008. Research interests include uses of genomic testing, public knowledge of genetics, and genetics education.
Readings:
Roberts, ME, Riegert-Johnson, DL, & Thomas, B. (2011) Self Diagnosis of Lynch Syndrome Using Direct to Consumer Genetic Testing: A Case Study. Journal of Genetic Counseling 20:327-329. Available to members of the Duke University Community here.
Wade, C & Wilfond, B. (2006) Ethical and Clinical Practice Considerations for Genetic Counselors Related to Direct-to-Consumer Marketing of Genetic Tests. American Journal of Medical Genetics 142C: 284-292. Available to members of the Duke University Community here.
McGuire, A & Burke, W. (2011) Health System Implications of Direct-to-Consumer Personal Genome Testing. Public Health Genomics 14: 53-58. Available to members of the Duke University Community here.
11/18/2011 Joyce Kim
Topic: Forensic uses of DNA databases
Speaker Bio: Joyce is currently a research assistant at the Institute for Genome Sciences & Policy. She graduated from Duke (Trinity 2011) with a B.A. in International Comparative Studies, a minor in History, and a certificate in Genome Sciences & Policy. She explored issues surrounding DNA technologies in criminal investigations during the Spring 2011 Genome Sciences & Policy Senior Capstone course. Joyce plans to attend law school to study science law and policy.
Readings:
Gershaw C.J., Schweighardt A.J., Rourke L.C., and Wallace M.M. Forensic utilization of familial searches in DNA databases. Forensic Sci Int Genet. 2011 5(1): 16-20. Available to members of the Duke University community here.
Dresser, R. Families and Forensic DNA Profiles. Hastings Center Report. 41(3): May-June 2011. Available to members of the Duke University community here.
10/28/2011 Robert Mitchell (CIEMAS 2120, 11:30 AM- 12:30 PM)
Note: This is on the fourth Friday of October, in a different room from regularly scheduled meetings.)
Topic: Genomics, Biobanks, and the Trade-Secret Model
Speaker Bio: Robert Mitchell is Associate Professor in English, Director of the Center for Interdisciplinary Studies in Science and Cultural Theory, Affiliated Faculty in Women’s Studies, and a Faculty member of the Institute for Genome Sciences and Policy at Duke University. His past research has focused on late eighteenth- and early nineteenth-century intersections between science and literature, as well as more contemporary relationships among biological materials, economics, and information processing technologies. His published work includes Tissue Economies: Blood, Organs and Cell Lines in Late Capitalism (Duke UP, 2006) and the co-authored DVD-ROM Biofutures: Owning Body Parts and Information (U of Pennsylvania P, 2008). His current work focuses on the social and economic dimensions of large-scale biobanks.
Readings:
Recent editorial:
Mitchell R et al. "Genomics, Biobanks, and the Trade-Secret Model." 2011 Science 332(15 Apr 2011): 309-310. Available to the Duke University community here.
Comments on this editorial, and the responses:
Matsuura JH. "Trade-Secret Model: Privacy Rights." 2011 Science 333(16 Sept 2011): 1574-1576. Available to the Duke University community here.
9/9/2011 Robert Cook-Deegan (11:00 AM- 12:00 PM)
Topic: The Myriad/BRCA Patent Lawsuit
Speaker Bio: Dr. Robert Cook-Deegan is director of the IGSP Center for Genome Ethics, Law, and Policy (GELP) and Research Professor of Public Policy, Biology, and Medicine. He is also a Professor in the Genome Focus cluster for Fall 2011. Please see his full faculty page for more details.
Readings and subject background: The "Myriad" or "BRCA" patent lawsuit deals broadly with the subject of patents on DNA. More specifically, it concerns the validity of patents held by Myriad Genetics on genes responsible for inherited susceptibility to breast and ovarian cancers. The company made headlines when it raced to find the genes now called BRCA1 and BRCA2 and, later, when it used its intellectual property to dominate the American genetic testing market for those genes.
In 2008, the case was brought against Myriad Genetics and the United States Patent and Trademark Office (USPTO) by a group of more than twenty plaintiffs. Coordinated and argued by the American Civil Liberties Union (ACLU) and the Public Patent Foundation, the Myriad case is being anxiously followed and hotly debated by scholars, scientists, lawyers, and many others. For a detailed history of the case, please see the briefing page on the subject developed by the IGSP Center for Genome Ethics, Law, and Policy.
For the Journal Club, suggested readings are the recent (late August 2011) petitions for a panel rehearing of the most recent ruling in the case, a July 29th decision handed down by the United States Court of Appeals for the Federal Circuit (CAFC). The CAFC was formed by federal statute in 1982 and hears appeals of patent cases from all U.S. District courts. Both plaintiffs and defendants petitioned for rehearing, the former on August 25th and the latter on August 29th. Also suggested is Dr. Cook-Deegan's invited editorial on the July 29th ruling, which appeared in the August 5th, 2011 edition of The Cancer Letter.
Spring 2011 Meetings
6/17/2011 Misha Angrist
Topic: "It's My Own Business!"
Speaker Bio: Misha Angrist is an Assistant Professor at the IGSP. His doctoral and postdoctoral work was in human genetics, and he was formerly a board-eligible genetic counselor. He received an MFA in writing and literature from the Bennington Writing Seminars, and his fiction and nonfiction have appeared in numerous literary journals – he has been nominated for the Pushcart Prize. He blogs once in a while at http://blogs.plos.org/genomeboy/, and tweets often @MishaAngrist.
Readings:
Friend SH, Ideker T. Point: Are we prepared for the future doctor visit? Nat Biotechnol. 2011 Mar;29(3):215-8. Available to members of the Duke community here.
Terry SF, Terry PF. Power to the people: participant ownership of clinical trial data. Sci Transl Med. 2011 Feb 9;3(69):69cm3. Available to members of the Duke community here.
5/20/2011 Lauren Dame
Topic: "Should individual research results be returned to participants in genetic research studies? If so, when and how?"
Speaker Bio: Lauren Dame is the Associate Director for Genome Ethics, Law and Policy. She teaches "Bioethics" and "Genetics & the Law" at Duke Law School. Ms. Dame received her A.B. in Human Biology from Stanford University, her J.D. from Harvard Law School, and her M.P.H. from Harvard School of Public Health. She has served as a Visiting Lecturer in Law at Yale Law School, an associate at the law firm of Covington & Burling, and Staff Attorney for Public Citizen's Health Research Group in Washington, D.C. Her areas of interest include bioethics, genetics, human subjects research, healthcare policy, and the effects of technology on privacy. From September 2002 to December 2003, she was the Chair of North Carolina's State Task Force on Genetics and Public Health.
Readings:
Articles:
L. M. Beskow, W. Burke, Offering individual genetic research results: Context matters. Sci. Transl. Med. 2, 38cm20 (2010). Available to members of the Duke University community here.
Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants: Updated Guidelines From a National Heart, Lung, and Blood Institute Working Group; Circulation: Cardiovascular Genetics 2010; 3; 574-580. Free online version available here.
Blog posts:
It's My Genome: Should researchers be obliged to return genetic data to research participants? Genomics Law Report.
Is there an obligation to return genetic data to participants? Kaiser responds to 23andMe TEDMED Criticism. Genomics Law Report.
Summary of a public survey:
Public expectations for return of results from large-cohort genetic research (2008). Genetics & Public Policy Center, Johns Hopkins University. Available online here.
4/22/2011 Michele Easter
Topic: "Warriors, Orchids, and Sluts: On the Implications of Behavioral and Psychiatric Genetics"
Speaker Bio: Michele is a postdoctoral associate for Genome Ethics, Law & Policy. Her degree is in Sociology and her research focuses on public understanding of genetic involvement in psychiatric and behavioral disorders. For her dissertation, she interviewed 50 women diagnosed with anorexia or bulimia nervosa about their views on eating disorder causation and the idea of genetic involvement. She is interested in the broad societal impact of genetic and brain-based understandings of human behavior, including whether and how such understandings do (or should) affect perceptions of individual and societal responsibility. Her next project is likely to address perceptions of genetic influence on violence. Before graduate school, she worked for several years on ethical, legal, and social implications (ELSI) research with an interdisciplinary team at UNC-Chapel Hill.
Readings:
Parens, E. (2004). "Genetic differences and human identities. On why talking about behavioral genetics is important and difficult." Hastings Cent Rep 34(1): S4-35 [1-32 – please read 1-7 (top), 23-24] Available online here.
Yong, E. (2010). "Dangerous DNA: The truth about the 'warrior gene'." New Scientist (2755). Available to members of the Duke University community here.
3/18/2011 David Parker
Topic: "Exome sequencing and functional testing of genetic variants: a better approach to studying human genetic disorders?"
Background: To date, the sequencing of human genomes and subsequent genome wide association studies have had a disappointingly small impact on our understanding of complex human genetic disorders. This is largely due to the difficulty interpreting the functional significance of individual base changes found in the human genome, the majority of which arise in DNA that does not encode protein. This problem is driving a shift toward a more targeted approach: sequencing the portion of the genome that is transcribed and translated into proteins (the exome). The principal advantage of this experimental design is that variants present in coding regions of DNA are far easier to interpret than non-coding changes. However, to be truly informative variants found via exome sequencing must be coupled to functional allelic data in vivo using model systems (i.e. determining what effect a mutation has on the function of the protein). Functional testing is a time consuming and expensive venture. This journal club will discuss questions surrounding this new approach to genomic medicine, such as:
Is exome sequencing a better use of public funds than a whole genome approach, which has in the past received the majority of funding?
This approach can be used to diagnose very young individuals (including prenatally), which generates a host of social and ethical issues, including:
What are the consequences when functional testing results in ambiguous data?
How do we address incidental findings in minor patients and/or siblings of affected individuals?
Speaker Bio: Dave is currently a postdoc in the Center For Human Disease Modeling at Duke University studying the genetics and cell biology of pleiotropic human diseases. His research focuses on the ciliopathies, an overlapping set of individually rare genetic syndromes arising from the dysfunction of cilia. Cilia are organelles that play a multitude of important roles in the development and homeostasis of vertebrates. His current work addresses the genetic basis of phenotypic variability in complex disease traits and the mechanistic defect of disorders that exhibit both structural and progressive features. Prior to arriving at Duke, Dave received a BSc in Biochemistry from Manchester University, England and a PhD from the University of Michigan, where he studied signal regulated gene transcription using Drosophila as a model organism.
Readings:
Amy Maxmen, "Exome Sequencing Deciphers Rare Diseases," Cell, March 2011. Available to members of the Duke University community here.
Jamie K. Teer and James C. Mullikin, "Exome sequencing: the sweet spot before whole genomes," Human Molecular Genetics, August 2010. Available online here.
Nicholas Katsanis, "From association to causality: the new frontier for complex traits," Genome Medicine, February 2009. Available online here.
2/18/2011 Kathryn Maxson
Topic: "Genomes for medical benefit: Are we getting the best possible return on public investment in the HGP?"
Speaker Bio: Kathryn is currently working as a research assistant for Genome Ethics, Law, and Policy, where her research focuses on the history of next-generation DNA sequencing technologies; modern and historical models of data sharing in genomics; and comparative analyses of DNA sequencing with other major technological developments of the late 20th and early 21st centuries, including personal computing and the Internet. Before coming to IGSP, Kathryn graduated from Duke (T'10) with a B.S. in Biology and minors in Chemistry and History. As an undergraduate she was a Faculty Scholar, and in her independent work explored issues of science education and science policy in the United States, with particular attention to post-Sputnik America. After working at Duke, she plans to attend graduate school and gain more advanced training in either science writing or the history of science.
Readings:
Stephen S. Hall, "Revolution Postponed," Scientific American, October 2010. Available to members of the Duke University community here.
Jon McClellan and Mary-Claire King, "Genetic Heterogeneity in Human Disease," Cell, April 16, 2010. Available to members of the Duke University community here.
(optional reading) Eric D. Green, Mark S. Guyer, & National Human Genome Research Institute. "Charting a course for genomic medicine from base pairs to bedside" 2011 Nature 470 (10 Feb): 204-213. Available to members of the Duke University community here.
1/28/2011 Cristina Kapustij
Topic: The NCAA's testing of its athletes for sickle cell trait
Speaker Bio: Cristina Kapustij, MS. Cristina is currently working as a policy analyst at IGSP's Genome Ethics, Law, and Policy, where her research focuses on issues of intellectual property, bio-security, technology access, and the history and policy implications of DNA sequencing, amongst other topics. Before coming to Duke, she earned her MS in Biotechnology from Georgetown University. In the fall of 2008, she was a Christine Mirzayan Fellow in Science and Technology Policy at the National Academies in Washington, DC. As a Fellow, she studied synthetic biology, direct-to-consumer genetic testing, and engaged in the analytical processes informing science and technology policy in the United States.
Readings:
Vence L. Bonham, J.D., George J. Dover, M.D., and Lawrence C. Brody, Ph.D."Screening Student Athletes for Sickle Cell Trait— A Social and Clinical Experiment," The New England Journal of Medicine, September 2010. Available to members of the Duke University community here.
Rob Stein, "Sickle cell testing of athletes stirs discrimination fears," Washington Post, September 2010. Available online here.
2010 Meetings
Friday, April 30, 12:00 -1:00 pm
The next Science and Society Journal Club meeting will be on the topic, "Signing up for the DNA draft: What should be the status of human tissue samples?" The discussion will be lead by Chris Heaney. The meeting will be held at a new location, RENCI Conference Room, Telcom Building (behind CIEMAS)
Background: Rebecca Skloot's book The Immortal Life of Henrietta Lacks, as well as the recent settlement of the Havasupai tribe's suit over alleged misuse of their blood samples in favor of tribal members, have both brought attention to the already hot topic of the status of human tissue samples used for research. The growing number and size of collections of tissue samples, the increasing power of technologies for genomic analysis, and the rising economic importance of biotechnology overlap with perpetual questions about how much or little people identify with their bodies and what kind of commerce, if any, in human biological material is appropriate. This journal club will discuss questions including and related to:
-How much say should patients and research participants have in what happens to excised tissue samples?
-If patients and research participants have different underlying assumptions about the relationship between research participants and excised tissue samples, how can researchers constructively interact with participants?
-If and when researchers, participants, and others involved in the collection and use of human tissue samples have conflicts over the use of samples, how should those conflicts be resolved, and how can courts and universities choose between the different values at stake when there are disputes over the tissue samples?
SUGGESTED READING:
-To see how one family thinks about cell lines derived from a parent's unknowingly shared tissue sample, see Chapter 32 of The Immortal Life of Henrietta Lacks. (attached)
-For a discussion some of the relevant court cases and discussion of how some individuals have participated in the tissue market, see Rebecca Skloot, "Taking the Least of You," New York Times Magazine, 2006, available here.
-For a review of the Havasupai case, see Amy Harmon, "Indian Tribe Wins Fight to Limit Research of Its DNA," New York Times, April 22, 2010, available here.
-For one view of the field by several academic experts, see A. Cambon-Thomsen et al, "Trends in Ethical and Legal Frameworks for the Use of Human Biobanks," Eu Respir. (attached)
-For one way to organize biobanks, see David E. Winickoff and Richard N. Winickoff, "The Charitable Trust as a Model for Genomic Biobanks," NEJM. (attached)
February 19th, 2010
The first Science and Society Journal Club of the semester will be held on Feb. 19 at noon in 100 North Building. The topic for discussion, lead by Sara Katsanis, IGSP Associate in Research, will be "Criminal DNA Database Expansions and Familial Searching".
To RSVP, please go to http://tinyurl.com/ye4omgw.
1) General Assembly of North Carolina, Session 2009, House Bill 1403
(Collect DNA Sample on Arrest)
2) "Dangerous Relations" Investigative Practice Journal (D Small)
3) "Genetic Surveillance for All" Slate Magazine (J Rosen)
4) "Debating DNA Collection", NIJ Journal (Berson)
Other Journal Club meetings will be held on March 19, April 16, and May 14 at noon in North Building room 100. Topics and discussion leaders to be announced. If you have ideas or would like to
volunteer, please contact Tomalei Vess at tomalei.vess@duke.edu.
2009 Meetings
The next meeting of the IGSP Science & Society Journal Club will be on Friday, December 11 at 12:00 p.m. in 100 North. Pizza will be served. Lisa Warner will lead the discussion regarding the intersection of genetics and athletic performance. Please read the following material before attending the meeting; Genetics of Athletic Performance , Genetically Transformed World Records and Cheating is so 1999 .
November 20th, 2009
Our guest lecturer will be Dr. Alex Rosenberg, R. Taylor Cole Professor of Philosophy, who will be discussing a chapter from his book, "Reality: The Rough Guide". Book excerpt is below. The topics will include the following:
1. Does an understanding of science commit you to "scientism" (including atheism and its corollary tenets)?
2. Should scientists stay in the closet about the implications of science for "the persistent questions" (e.g. Is there a God?) simply because it is politically favorable to do so?
3. Why is science so hard to market to the general public? Can it ever compete with religious claims about physical reality given its inherent disadvantages in capturing public interest?
Because these might be sensitive topics for some attendees, we would like for everyone to put forth their best effort to have a dispassionate academic debate about these issues. It will be very interesting to have biologists, science policy experts, and a philosopher of biology discuss these topics.
Reading material for this meeting can be found here.
October 23rd, 2009
The next meeting of the IGSP Science & Society Journal Club will be on Friday, October 23 at 12:00 p.m. in 100 North. Pizza will be served. Sayan Mukherjee, Shubha Chandrasekharan, and Stoyan Georgiev will be presenting Studies of genetic diversity in India: Implications for health and society. Please read the following material before attending the meeting; Population Structure and Eigenanalysis, Tracing India's Invisible Threads and Reconstructing Indian Population History.
Please email Shandra Robertson back if you are interested in participating.
March 20th, 2009
The next meeting of the IGSP Science & Society Journal Club will be on Friday, March 20th at 12:00 p.m. in 100 North. Pizza will be served. Matthew Cook will be presenting. Please read the following material before attending the meeting; Popularizing Science in 1879, Carl Sagan, an Astronomer Who Excelled at Popularizing Science, Is Dead at 62, and The Power of Words.
February 27th, 2009
The next meeting of the IGSP Science & Society Journal Club will be on Friday, February 27th at 12:00 p.m. in 100 North. Pizza will be served. Felipe Garcia will present on international scientific cooperation and regulating the spread of scientific knowledge and reagents. Reading materials can be downloaded here and here.
January 23rd, 2009
The next IGSP Science & Society Journal Club is scheduled for Friday, January 23rd at 12pm in 100 North. Audrey Howell is going to be leading a discussion the most important "Science & Society" issues for the next few years you can download the reading materials here and here.
2008 Meetings
December 5th 2008
The next IGSP Science & Society Journal Club is scheduled for Friday, December 5th at 12pm in 100 North. Felipe Garcia is going to be leading a discussion on U.S. policies on human embryonic stem cells. You can download the reading for this week here.
September 12th 2008
The next IGSP Science & Society Journal Club is scheduled for Friday, September 12th at 12pm in 100 North. Subha and Andreas are going to be leading a discussion on the dual use issue, how genomic information can be used for the both the benefit and detriment of society. We'll be using one particular example as a starting point. (Homer et al, attached). The news article (also attached) provides a nice summary of the results and a discussion of the implications.
June 20th 2008
On Friday, June 20th at 12pm in 100 North. Patrick Lynch will be presenting, and there are two background articles which will be discussed at the meeting (Therapeutic Misconception and Beyond Informed Consent).
May 9th 2008
On Friday, May 9th 2008 at 12pm in 100 North, Bill English will be presenting on the topic of "Devaluing Science". Please make sure you read the review of a book called "The Honest Broker: Making Sense of Science in Policy and Politics" by Roger A. Pielke, Jr. (Cambridge, 2007). The other article, "The New Politics of Technology", is optional.
March 7th 2008
Presenter: Audrey Howell
Where does science fit into politics - Is a Science Debate for Presidential candidates a good idea?
January 25th 2008
Presenter: Jeremy N.Block
History of Science Policy since WWII in the United States: Vannevar Bush and beyond.
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