2015
Tuesday, May 19th, 2015 - Danton Char, MD
Whole-genome sequencing in critically ill infants and emerging ethical challenges
Time: 12pm-1pm
Location: SCBE Conference Room (Directions HERE)
Facilitator: Danton Char, MD
Reading: Whole-genome sequencing for identification of Mendelian disorders in critically ill infants: a retrospective analysis of diagnostic and clinical findings. Willig LK, Petrikin JE, Smith LD, Saunders CJ, Thiffault I, Miller NA, Soden SE, Cakici JA, Herd SM, Twist G, Noll A, Creed M, Alba PM, Carpenter SL, Clements MA, Fischer RT, Hays JA, Kilbride H, McDonough RJ, Rosterman JL, Tsai SL, Zellmer L, Farrow EG, Kingsmore SF. Lancet Respir Med. 2015 Apr 27 PMID: 25937001
Whole-genome sequencing in critically ill infants and emerging ethical challenges. Char DS. Lancet Respir Med. 2015 May;3(5):333-5. doi: 10.1016/S2213-2600(15)00151-4. Epub 2015 Apr 27.
Tuesday, April 21st, 2015 - Bela Fishbeyn, MS
Conceptualizing the Addict: Russian Physicians on Responsibility and Culpability
National Resistance to Proven Health Policy
Time: 12pm-1pm
Location: SCBE Conference Room (Directions HERE)
Facilitator: Bela Fishbeyn, MS
Tuesday, March 10th, 2015 - Christopher Scott, PhD
Four Perspectives on the End of Life
Last week’s talk by Atul Gawande and recent essays by Gawande, Zeke Emanuel, Dan Callahan, and Oliver Sacks gives us an opportunity to discuss these authors’ reflections on the end of life. Come prepared to discuss the similarities and differences in their viewpoints, the significance and expectations of life-extending technologies, and the tensions between self determinism and medical paternalism. And, bring your own insights into the arguments presented in each of these papers. Hopefully, we’ll get a few words on the Jesuit response to Gwande’s essay from Father John Paris.
Time: 12pm-1pm
Location: SCBE Conference Room (Directions HERE)
Facilitator: Christopher Thomas Scott, PhD
Readings:Why I hope to die at 75, by Zeke Emanuel
On Dying After Your Time, by Dan Callahan
Letting Go, by Atul Gawande
My Own Life, by Oliver Sacks
Tuesday, January 20th, 2015 - Hank Greely, JD
The FDA's Draft Guidance on LDTs
Time: 12pm-1pm
Location: SCBE Conference Room (Directions HERE)
Facilitator: Hank Greely, JD
Readings: FDA, Framework for Regulatory Oversight of Laboratory Developed Tests (LDTs) (Oct. 2014) PDF>>
James P. Evans and Michael S. Watson, Genetic Testing and FDA Regulation Overregulation Threatens the Emergence of Genomic Medicine, January 5, 2015.doi:10.1001/jama.2014.18145. Link>>
Joshua Sharfstein, FDA Regulation of Laboratory-Developed Diagnostic Tests Protect the Public, Advance the Science, January 5, 2015. doi:10.1001/jama.2014.18135. Link>>
2014
Tuesday, November 11th, 2014 - Joan Fujimura, PhD
Clines without Classes: A critique of the use of new genomic data to reconstitute biological race categories
The readings for this week include an article ("GC") published in Sociological Theory, which argues that recent developments in human genetic variation studies support the idea that races are, at their core, biological categories. Two other articles in the same journal critique the first article. One demonstrates how GC misinterprets the scientific data. The second critiques the arguments made in GC and argues that GC is better understood as a contribution toward theories of biological racial determinism rather than as a modification of social constructionism. The discussion will be led by the lead author of “Clines without Classes.”
Time: 12pm-1pm
Location: SCBE Conference Room (Directions HERE)
Facilitator: Joan Fujimura, PhD
Readings: Fujimura et al. "Clines without classes: How to make sense of human variation." Sociological Theory 2014 32:208. PDF>>
Shiao et al. "The Genomic Challenge to the Social Construction of Race." Sociological Theory 2012 30:67. PDF>>
Morning, Ann. "Does Genomics Challenge the Social Construction of Race?" Sociological Theory 2014 32:189. PDF>>
Tuesday, October 28th, 2014 - Mildred Cho, PhD
Regulatory and ethical issues of research using gene drives
Time: 12pm-1pm
Location: SCBE Conference Room (Directions HERE)
Facilitator: Mildred Cho, PhD
Readings: Oye et al. "Regulating gene drives." Science 2014 Aug 8;345(6197):626-8. PDF>>
Tuesday, September 23rd, 2014 - Stephanie Alessi, JD
The Regulation of Laboratory-Developed Tests: Is the FDA Moving in the Right Direction?
On July 31, the FDA notified Congress of its intent to initiate a new risk-based approach to the oversight of laboratory-developed tests (LDTs). Historically, CLIA laboratory certification has been the primary oversight mechanism for LDTs—but the evolution of LDT technology and business practices has raised questions as to whether this is still an adequate regulatory approach. The FDA's proposed framework would subject moderate- and high-risk LDTs to increasing regulatory requirements, including premarket review, registration, listing, and adverse-event reporting. On September 9, the Health Subcommittee of the House of Representatives' Energy and Commerce Committee held a hearing where stakeholders debated this proposal, highlighting concerns such as the FDA's statutory authority and the potential effects on innovation.
At this journal club, we will discuss the arguments both for and against the FDA's proposal, in anticipation of a forthcoming draft guidance for public comment. Readings include (1) the draft guidance, (2) congressional testimony from the FDA, (3) stakeholder testimony opposing the FDA's approach, and (4) a stakeholder policy statement supporting the FDA's approach. Supplementary information, including transcripts from additional witnesses and video of the September 9 congressional hearing, is available HERE.
Time: 12pm-1pm
Location: SCBE Conference Room (Directions HERE)
Facilitator: Stephanie Alessi, JD
Readings: Anticipated Details of the Draft Guidance: Framework for Regulatory Oversight of LDTs (focus on pp.7-32) PDF>>
Statement of Jeffrey Shuren, MD, JD, Director of the Center for Devices and Radiological Health PDF>>
Statement of Alan Mertz, President of The American Clinical Laboratory Association PDF>>
Sawyers CL, van't Veer LJ. Reliable and effective diagnostics are key to accelerating personalized cancer medicine and transforming cancer care: a policy statemetn from the American Association for Cancer Research. Clin Cancer Res. 2014 Oct 1;20(19):4978-81 Full Text>>
Wednesday, June 18th, 2014 - Hywote Taye, MA
Three-Parent Babies and the Ethics of Mitochondrial Replacement
In Britain, a recent breakthrough in IVF technology, called mitochondrial replacement, allows mitochondrial DNA from a female donor to replace that of the embryo's mother. This technique would allow parents using IVF to avoid passing down potentially devastating mitochondrial disorders. The resulting healthy embryos then contain DNA from 3 people: most comes from the biological mother and father (the nuclear DNA) and about less than 1% (mitochondrial DNA) comes from the female donor. In the UK, while it is legal for this technique to be carried out in the lab, the embryos cannot be implanted or used in fertility treatments.
Given the potentially life-saving benefits of IVF using mitochondrial replacement, the UK government announced in 2013 that it would be supporting its use after the production of draft regulations. Upon request from the Department of Health, the HFEA (Human Fertilization and Embryology) released its (generally positive) findings on the safety of the procedure in June of this year. The procedure is expected to be available in 2015. As expected, several groups are opposed to the new regulations, citing concerns over "human dignity" and "designer babies", among others. The FDA also held hearings as to the ethics of this technique in February of this year.
Time: 11am-12pm
Location: SCBE Conference Room (Directions HERE)
Facilitator: Hywote Taye, MA
Readings: "UK drafts rules for three-parent IVF babies." Medical News Today. February 28,2014. PDF >>
"Three parent babies 'incompatible with human dignity.'" Telegraph. October 4, 2013. PDF >>
Creation of Embryos with Genetic Material from More than Two Progenitor Persons (Written Declaration No. 557). Parlimentary Assembly, Council of Europe. October 3, 2013. PDF >>
Third scientific review of the safety and efficacy of methods to avoid mitochondrial disease through assisted conception: 2014 update. Report provided to the Human Fertilisation and Embryology Authority (HFEA). June 2014.PDF >>
Wednesday, May 21st, 2014 - Stephanie Alessi, JD
What is Genetic Malpractice?: Potential Legal Implications of the Evolving Standard of Care in Clinical Genetics
In tort law, physicians are held to a legal standard of care based on what a similarly trained physician would do in a similar situation. However, with the increasing—and often uneven—uptake of genetic technologies in clinical practice (e.g., noninvasive prenatal screening and whole-exome sequencing), in many cases the definition of "standard of care" is changing. As a result, clinicians are increasingly finding it difficult to predict what legal duties they will owe to their patients with regard to new genetic technologies. This journal club will review two articles that explore the potential legal implications of these changes to the standard of care
Time: 11am-12pm
Location: SCBE Conference Room
Facilitator: Stephanie Alessi JD
Readings: Gary E. Marchant & Rachel A. Lindor. "Personalized medicine and genetic malpractice." Genetics in Medicine 15:921-922 (2013). PDF >>
Ellen Wright Clayton et al. "Managing incidental genomic findings: legal obligations of clinicians." Genetics in Medicine 15:624-629 (2013). PDF >>
NOTE: THE JOURNAL CLUB SCHEDULED FOR WEDNESDAY APRIL 23RD 2014 WITH SCBE PROJECT MANAGER EMILY BORGELT WAS CANCELLED.
Wednesday, March 26th, 2014 - Hayden Harvey
Bioinformatic & Cryptographic Concepts Associated with Risks to, and Efforts to Protect, Privacy in Genomic Research
The increased affordability and resolution of whole genome sequencing combined with an ever more efficient and speedy information technology infrastructure has resulted in an uneasy tension between, on the one hand, the unprecedented opportunities for researchers to share data, a goal which has been more or less built into genomic research thanks to data sharing policies, and on the other hand, the risks to privacy that accompany the web-based sharing of large volumes of genomic data. This journal club will discuss bioinformatic/cryptographic concepts associated with risks to, and efforts to protect, privacy in genomic research.
Time: 11am-12pm
Location: SCBE Conference Room
Facilitator: CIRGE Post-Bacc, Hayden Harvey
Readings: Rodriguez, Laura L., Lisa D. Brooks, Judith H. Greenberg, and Eric D. Green. "The complexities of genomic identifiability." Science 339.6117 (2013): 275-276. PDF >>
El Emam, Khaled. "Methods for the de-identification of electronic health records for genomic research." Genome Medicine 3.4 (2011): 25. PDF >>
Thomas Sumner. "How to Hide Your Genome." ScienceNow (February 16, 2014). http://news.sciencemag.org/biology/2014/02/how-hide-your-genome
Wednesday, February 26th, 2014 - Colleen Berryessa
The Ethics of Genetic 'Pre-Crime': What Can (and Should) Genetics Tell Us About Predicting Future Criminal Behavior?
Time: 11am-12pm
Location: SCBE Conference Room
Facilitator: CIRGE Program Manager, Colleen Berryessa
Readings: McCartney, Carole. "The DNA revolution and forensic futures: Carole McCartney argues that the DNA revolution is unlikely to ‘rid societies of crime’." Criminal Justice Matters 81, no. 1 (2010): 26-27. PDF >>
Levitt, Mairi, & Elisa Pieri. "“It could just be an additional test couldn't it?” Genetic testing for susceptibility to aggression and violence." New Genetics and Society 28.2 (2009): 189-200.
PDF >>
Townsend, Mark & Anita Asthana. "Put young children on DNA list, urge police." The Observer 16 (2008). http://www.theguardian.com/society/2008/mar/16/youthjustice.children
Optional: Cipolla, C. (2012). Let's talk about "Precrime". The Neuroethics Blog. http://www.theneuroethicsblog.com/2012/07/lets-talk-about-precrime.html
Wednesday, January 29th, 2014 - Dr. Marsha Michie, PhD
Ethical Developments in the FDA's Halt of 23andMe,Inc.
Time: 1PM-2PM *SPECIAL TIME*
Location: SCBE Conference Room
Facilitator: Dr. Marsha Michie, PhD
Readings: Green, Robert and Nita Farahany. January 15, 2014. "Regulation: The FDA is overcautious on consumer genomics." Nature 505: 286–28. doi:10.1038/505286a. PDF >>
Warning Letter from FDA to 23andMe,Inc. November 22, 2013. http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2013/ucm376296.htm
Pollack, Andrew. November 25, 2013. "F.D.A. Orders Genetic Testing Firm to Stop Selling DNA Analysis Service." NY Times. http://www.nytimes.com/2013/11/26/business/fda-demands-a-halt-to-a-dna-test-kits-marketing.html
2013
Wednesday, November 20th, 2013 - Dr. Mildred Cho, PhD
Ethical Implications of "Clinical Whole-Exome Sequencing for the Diagnosis of Mendelian Disorders"
This journal club session will discuss the ethical implications of the 2013 New England Journal of Medicine Yang et al. article "Clinical Whole-Exome Sequencing for the Diagnosis of Mendelian Disorders."
Time: 11:00AM - 12:00PM
Location: SCBE Conference Room
Facilitator: Dr. Mildred Cho, PhD
Readings: Yang, Y., Muzny, D. M., Reid, J. G., Bainbridge, M. N., Willis, A., Ward, P. A., ... & Eng, C. M. (2013). Clinical whole-exome sequencing for the diagnosis of mendelian disorders. New England Journal of Medicine. PDF>>
Wednesday, October 16th, 2013 - Inna Sayfer, PhD
Popular Portrayals of the field of Human Microbiome Studies
This journal club session will put messages patients receive on probiotics in a more general context of how the field of Human Microbiome research is described in popular literature. We will discuss the 2013 paper by Margaret A. Brinich, Mary Beth Mercer, Richard Sharp called “An Analysis Of Online Messages About Probiotics."
Time: 11:00AM - 12:00PM
Location: SCBE Conference Room
Facilitator: Inna Sayfer, PhD
Readings: Brinich, M. A., Mercer, M. B., & Sharp, R. R. (2013). An analysis of online messages about probiotics. BMC gastroenterology, 13(1), 5. PDF>>
Wednesday, September 18th, 2013 - Emily Liu, BA
Immortal cells and family ties: Genomics, ethics, and the Lacks family
Rebecca Skloot's "The Immortal Life of Henrietta Lacks" brings to life many of the ethical issues that plagued the creation and later utilization of the Hela cell line. In this Journal Club, we discuss the controversial history of the Hela cell line with an eye towards recent developments, the agreement brokered between NIH and the Lacks family, and the possible implications for future policies and practices related to informed consent, donor rights, and biobanks and tissues research.
Time: 11:00AM - 12:00PM
Location: SCBE Conference Room
Facilitator: Emily Liu, BA
Readings:
Hudson, K. L., & Collins, F. S. (2013). Biospecimen policy: Family matters. Nature, 500(7461), 141-142. PDF>>
Callaway, E. W. E. N. (2013). Deal done over HeLa cell line. Nature, 500(7461), 132-133. PDF>>
"How Will We Treat This Generation's Henrietta Lacks?" By Ann Bonham, PhD PDF>>
Optional: Adey, A., Burton, J. N., Kitzman, J. O., Hiatt, J. B., Lewis, A. P., Martin, B. K., ... & Shendure, J. (2013). The haplotype-resolved genome and epigenome of the aneuploid HeLa cancer cell line. Nature, 500(7461), 207-211. PDF>>
Wednesday, June 19th, 2013 - Marsha Michie Ph.D
Doing Something About Cancer: Motivations of Participants in Whole Genome Sequencing Research
As the range and efficacy of cancer treatments have grown, cancer patients have embraced self-empowerment by “doing something” about the disease—whether through shared decision-making with doctors, fund-raising “for the cure,” or joining advocacy groups. In a recent study with 24 participants in whole-genome sequencing research, we found that cancer patients and their family members saw research participation as another way of feeling empowered and “doing something” about cancer. Their reasons for participation reflect many that have been cited by other genetic research participants, yet their exceptional motivation makes them ideal candidates for exploratory genomic research with novel techniques.
Time: 11:00AM - 12:00PM
Location: SCBE Conference Room
Facilitator: Marsha Michie Ph.D
Readings:
Hoeyer, K. (2003). ‘Science is really needed—that’s all I know': informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden. New Genetics and Society, 22(3), 229-244. Hoeyer, K. (2003). ‘Science is really needed—that’s all I know': informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden. New Genetics and Society, 22(3), 229-244. PDF>>
Michie, M., Henderson, G., Garrett, J., & Corbie-Smith, G. (2011). If I could in a small way help”: Motivations for and beliefs about sample donation for genetic research. Journal of Empirical Research on Human Research Ethics, 6(2), 57. PDF>>
NOTE: THE JOURNAL CLUB SCHEDULED FOR WEDNESDAY MAY 15TH WITH SCBE PROJECT MANAGER INNA SAYFER WAS CANCELLED.
Wednesday, April 17th, 2013 - Louanne Hudgins, M.D., FACMG
"aCGH in Prenatal Diagnosis: What do we gain and what do women really want?"
Prenatal screening and diagnosis was originally developed for common conditions with well described phenotypes like neural tube defects, Down syndrome and trisomy 18. With new technology, we can identify microdeletions/microduplications with decreased penetrance some that infer a predisposition for autism spectrum disorder and psychiatric disorders. Is this something that all women want?
Time: 11:00AM - 12:00PM
Location: SCBE Conference Room
Facilitator: Louanne Hudgins, MD, FACMG
Reading:
Ronald Wapner et al. 2012. "Chromosomal Microarray versus Karyotyping for Prenatal Diagnosis." New England Journal of Medicine Vol. 367 No. 23: 2175-2184. PDF>>
NOTE: THE JOURNAL CLUB SCHEDULED FOR WEDNESDAY MARCH 20TH WITH CIRGE POST-DOC MEGAN ALLYSE WAS CANCELLED.
Wednesday, February 20th, 2013 - Dr. Marc Feldman
"Epigenome-Wide Association Data Implicate DNA Methylation
as an Intermediary Risk in Rheumotoid Arthritis "
Abstract: Epigenetic mechanisms integrate genetic and environmental causes of disease, but comprehensive genome-wide analyses of epigenetic modifications have not yet demonstrated robust association with common diseases. Using Illumina HumanMethylation450 arrays on 354 anti-citrullinated protein antibody–associated rheumatoid arthritis cases and 337 controls, we identified two clusters within the major histocompatibility complex (MHC) region whose differential methylation potentially mediates genetic risk for rheumatoid arthritis. To reduce confounding factors that have hampered previous epigenome-wide studies, we corrected for cellular heterogeneity by estimating and adjusting for cell-type proportions in our blood-derived DNA samples and used mediation analysis to filter out associations likely to be a consequence of disease. Four CpGs also showed an association between genotype and variance of methylation. The associations for both clusters replicated at least one CpG (P < 0.01), with the rest showing suggestive association, in monocyte cell fractions in an independent cohort of 12 cases and 12 controls. Thus, DNA methylation is a potential mediator of genetic risk.
Time: 11:00AM - 12:00PM
Location: SCBE Conference Room (NOT HRPT116)
Facilitator: Dr. Marc Feldman
Reading:
Yun Liu et al. 2013. "Epigenome-wide association data implicate DNA methylation as an intermediary of genetic risk in rheumatoid arthritis." Nature Biotechnology 31: 142–147. PDF>>
Wednesday, January 16th, 2013 - Nanibaa' Garrison, Ph.D
"Not All on Board:" Inconsistencies and Inefficiencies of IRB Practices
No two Institutional Review Boards (IRBs) are the same. A great deal of variation in review practices, decisions, and membership exist across IRBs, raising questions about how IRBs should operate. In this journal club, we will discuss the variation across IRBs and efforts to standardize practices.
Time: 11:00AM - 12:00PM
Location: Health Research and Policy (HRP) Redwood Building, Room T116(directions here)
Facilitator: CIRGE post-doc, Nanibaa' Garrison, Ph.D
Readings:
Lura Abbot and Christine Grady. "A Systematic Review of the Empirical Literature Evaluating
IRBs: What We Know and What We Still Need to Learn." J Empir Res Hum Res Ethics. 2011 March; 6(1): 3–19. doi:10.1525/jer.2011.6.1.3. PDF>>
Ryan Spellecy and Thomas May. "More Than Cheating: Deception, IRB Shopping, and the Normative Legitimacy of IRBs." Journal of Law, Medicine & Ethics. Winter 2012. PDF>>
2012
Wednesday, December 19th, 2012 - Lauren Milner, Ph.D
"Re-envisioning Research Ethics in the Era of 'Open' Science"
The shift towards large-scale data collection and widespread collaboration in genomic research has prompted the rise 'open' science, which grants broad access to data in the hope of translating genomic findings into clinical outcomes. While this movement promises to rapidly advance research, it challenges many existing ethical principles upon which research participation is based. In this journal club, we will outline the goals of 'open' science and discuss what this movement means for the future of research ethics.
Time: 11:00AM - 12:00PM
Location: MSOB 303
Facilitator: CIRGE post-doc, Lauren Milner, Ph.D
Readings:
Jeantine E. Lunshof, Ruth Chadwick, Daniel B. Vorhaus and George M. Church. "From genetic privacy to open consent." Nature. Volume 9. May 2008. PDF>>
Jane Kaye et al. "From patients to partners: participant-centric initiatives in biomedical research." Nature Reviews, Genetics. Volume 13. May 2012. PDF>>
Wednesday, November 14th, 2012 - Dr. Helen Longino, Ph.D
Topic: "The Social Life of Science"
Time: 11:00AM - 12:00PM
Location: MSOB 303
Facilitator: Helen Longino, Ph.D
Readings:
Longino, Helen. "The Social Life of Scientific Theories: A Case Study
from Behavioral Sciences" Biol Theory. 2012. PDF>>
Hatemi, Peter and Rose McDermott. "The genetics of politics: discovery,
challenges, and progress." Trends in Genetics. October 2012, Vol. 28, No. 10. PDF>>
"Body Politic: The Genetics of Politics." The Economist. October 6, 2012. PDF>>
Wednesday, October 24th, 2012 - Sandra Lee, Ph.D and Emily Borgelt, M.A.
"Whose Conflict?: Redefining Conflicts of Interest in Academic Research"
American universities increasingly embrace entrepreneurship and technology transfer (via commercialization) as part of their culture and mission. In light of this evolution, we revisit conflicts of interest and invite discussion about their meaning, management, and impact on relationships within the university system.
Time: 11:00AM - 12:00PM
Location: MSOB 303
Facilitator: Sandra Lee, Ph.D and Emily Borgelt, M.A.
Readings:
Argyres, Nicholas and Liebeskind, Julia Porter. "Privatizing the intellectual commons:
Universities and the commercialization of biotechnology." Journal of Economic Behavior & Organization Vol. 35 (1998): 427-454. PDF>>
"Get Rich U." by Ken Auletta. The New Yorker. April 30, 2012. PDF>>
Wednesday, September 19th, 2012 - Hank Greely, J.D.
"Extinction Is Forever - Or Is It?"
New biological technologies, including powerful genetic tools, are making it increasing plausible that at least some extinct species can be "revived," at least after a fashion. Hank Greely took part in a February 2012 workshop on reviving the passenger pigeon, is helping plan an October 2012 workshop looking more generally at "de-extinction", and is organizing a March 2013 public conference at Stanford on the topic. There is almost no thoughtful writing on the topic, but his former student Corey Salsberg's 2000 class paper for me (subsequently published) is about as good as it gets, though the technologies have changed. Prof. Greely will lay out the science, and then hope for a robust discussion of the legal, ethical, and policy issues that de-extinction might raise. This Journal Club will focus on that paper, which can be found here on the website.
Time: 11:00AM - 12:00PM
Location: MSOB 303
Facilitator: Hank Greely, J.D.
Readings:
Salsberg, Corey A. "Resurrecting the Woolly Mammot: Science, Law, Ethics, Politics, and Religion." 2000 Stan. Tech. L. Rev. 1. PDF>>
May 16th, 2012: Thirty-Second Journal Club
"Bad copies of priceless originals?" The ethics of cloning to resurrect species.
Time: 11:00AM - 12:00PM
Location: Li Ka Shing 209
Facilitator: Katie Shelef
Readings:
Minteer B. and Collins J. Move it or lose it? The ecological ethics of relocating species under climate change. Ecological Applications (2010) vol. 20 (7) pp. 1801-1804. PDF>>
Benford G. Saving the "Library of Life." Proc. Nati.Acad. Sci. (1992) vol. 89 pp. 11098-11101. PDF>>
Plan to Resurrect Woolly Mammoths Still Raises Issues on Ethics and Conservation HTML>>
Cloning vs. Conversation HTML>>
April 18th, 2012: Thirty-First Journal Club
Who Knows What? Scientific and Social Discourses on the Causes of Autism
Time: 11:00AM - 12:00PM
Location: Li Ka Shing 209
Facilitator: Joachim Hallmayer, MD and Lauren Milner, PhD
Readings:
Hallmayer et al. Genetic Heritability and Shared Environmental Factors Among Twin Pairs With Autism. Archives of General Psychiatry (2011) vol. 68 (11) pp. 1095-1102. PDF>>
Singh et al. Interacting and paradoxical forces in neuroscience and society. Nat Rev Neurosci (2007) vol. 8 pp. 153-160. PDF>>
March 21st, 2012: Thirtieth Journal Club
Prenatal Chromosomal Microarrays and the (Ethical, Legal, and Social) Significance of Variants of Uncertain Clinical Significance
Time: 11:00AM - 12:00PM
Location: Li Ka Shing 304
Facilitator: Lauren Sayres
Readings:
Wapner R. A Multicenter, Prospective, Masked Comparison of Chromosomal Microarray with Standard Karyotyping for Routine and High Risk Prenatal Diagnosis. (Conference Abstract) 2012. PDF>>
Savage et al. Evolving applications of microarray analysis in prenatal diagnosis. Current Opinion in Obstetrics and Gynecology (2011) vol. 23 (2) pp. 103-108. PDF>>
Kuehn. Prenatal genome testing sparks debate. JAMA (2008) vol. 300 (14) pp. 1637-9. PDF>>
February 15th, 2012: Twenty-Ninth Journal Club
Family Matters: The Impact of Direct-to-Consumer Genotyping on Patients and Families
Time: 11:00AM - 12:00PM
Location: Li Ka Shing 304
Facilitators: Kelly Ormond, MS CGC & Megan Grove
Readings:
Kaufman et al. Risky Business: Risk Perception and the Use of Medical Services among Customers of DTC Personal Genetic Testing. J Genet Counsel (2012) pp. 1-10. PDF>>
Corpas. A Family Experience of Personal Genomics. J Genet Counsel (2012) pp. 1-6. PDF>>
January 18th, 2012: Twenty-Eighth Journal Club
Is the Ball Game Over by Age 3? Making Sense of the Developmental Origins of Life-Course Disease
Time: 11:00AM - 12:00PM
Location: Li Ka Shing 304
Facilitator: Paul Wise, MD MPH
Readings:
Garner et al. Early Childhood Adversity, Toxic Stress, and the Role of the Pediatrician: Translating Developmental Science Into Lifelong Health. PEDIATRICS (2012) vol. 129 (1) pp. e224-e231 PDF>>
Kristof. A Poverty Solution that Starts with a Hug. New York Times January 7, 2012. PDF>>
2011
December 14th, 2011: Twenty-Seventh Journal Club
Privacy Lost and Found
Time: 11:00AM - 12:00PM
Location: Li Ka Shing 308
Facilitator: Nita Farahany, JD PhD
Readings:
Harmon. Defense Lawyers Fight DNA Samples Gained on Sly. New York Times April 3, 2008. PDF>>
Joh. Reclaiming "Abandoned" DNA: The Fourth Amendment and Genetic Privacy. Northwestern University Law Review (2006) vol. 100 (2) pp. 857-884. PDF>>
November 16th, 2011: Twenty-Sixth Journal Club
Genetic Testing for Mood Disorders: Current State of the Science, Potential Benefits and Ethical Concerns
Time: 11:00AM - 12:00PM
Location: Li Ka Shing 308
Facilitator: Doug Levinson, MD & Jessica Erickson
Readings:
Wilde et al. Community interest in predictive genetic testing for susceptibility to major depressive disorder in a large national sample. Psychol. Med. (2011) vol. 41 (08) pp. 1605-1613. PDF>>
October 19th, 2011: Twenty-Fifth Journal Club
The End of Sex
Time: 11:00AM - 12:00PM
Location: Li Ka Shing 308
Facilitator: Hank Greely, JD
Readings:
Hayashi et al. Reconstitution of the Mouse Germ Cell Specification Pathway in Culture by Pluripotent Stem Cells. Cell (2011) pp. 1-14 PDF>>
September 21st, 2011: Twenty-Fourth Journal Club
Secondary Uses and the Governance of De-Identified Data: Lessons from the Human Genome Diversity Panel
Time: 11:00AM - 12:00PM
Location: Li Ka Shing 308
Facilitator: Sandra Lee, PhD
Readings:
Fullerton and Lee. Secondary Uses and the Governance of De-Identified Data: Lessons from the Human Genome Diversity Panel. BMC Medical Ethics (in press). PDF>>
June 8th, 2011: Twenty-Third Journal Club
Changing Minds? Optogenetics and the potential for translation in humans
Time: 11:00AM - 12:00PM
Location: Li Ka Shing 203
Facilitator: Megan Allyse, PhD
Readings:
Deisseroth K. Controlling the Brain with Light. Scientific American Nov. 2010, 49-55. PDF>>
Schoonover and Rabinowitz. Control Desk for the Neural Switchboard. New York Times May 16, 2011. HTML>>
Goldman B. Head Lights. Stanford Medicine. Spring 2011, 38-42. PDF>>
May 11th, 2011: Twenty-Second Journal Club
Forgotten Genomes: A perspective on underrepresentation of ethnic minorities in human genome diversity projects
Time: 11:00AM - 12:00PM
Location: Li Ka Shing 203
Facilitator: Jennifer Li-Pook-Than, PhD
Readings:
Santos et al. Genetic Research in Native Communities. Progress in Community Health Partnerships: Research, Education, and Action 2008; 2(4):321-7. PDF>>
Supplemental:
Ross et al. Human Subjects Protections in Community-Engaged Research: A Research Ethics Framework. JERHRE 2010; 5(1):5-18. PDF>>
Dodson and Williamson. Indigenous peoples and the morality of the Human Genome Diversity Project. Journal of Medical Ethics 1999; 25:204-8. PDF>>
Collins. What we do and don't know about 'race', 'ethnicity', genetics and health at the dawn of the genome era. Nat Genet 2004; 36 (11 Suppl);S13-5. PDF>>
March 9, 2011: Twenty-First Journal Club
Expanded population based carrier screening: What do we know about the
potential psychosocial implications?
Time: 11:00AM - 11:50AM
Location: CCSR 4205
Facilitator: Kelly Ormond & Sarah Garcia
Reading:
Lewis et al. Can We Make Assumptions About the Psychosocial Impact of Living as a Carrier, Based on Studies Assessing the Effects of Carrier Testing? Journal of Genetic Counseling 2011; 20:80-97. PDF>>
February 9, 2011: Twentieth Journal Club
Experiencing Direct-to-Consumer Personal Genomics: Early Reports on Consumers and from Educators
Time: 11:00AM - 11:50AM
Location: CCSR 4205
Facilitator: Sandra Lee, PhD
Readings:
Bloss et al. Effect of Direct-to-Consumer Genomewide Profiling to Assess Disease Risk. NEJM 2011; Epub ahead of print. PDF>>
Walt et al. Lessons learned from the introduction of personalized genotyping into a medical school curriculum. Genet Med. 2010;13(1):63-66. PDF>>
January 12, 2011: Nineteenth Journal Club
The Impact of Early Life on Health Over the Life Course: What does the Evidence Really Say about Outcomes, Policy Priorities, and Claims to Justice?
Time: 11AM - Noon
Location: CCSR 4205
Facilitator: Paul Wise, MD MPH
Readings:
Doyle O et al. Investing in early human development: Timing and economic efficiency. Exon Hum Biol. 2009;7:1-6. Abstract>>
Wise PH. Confronting social disparities in child health: A critical appraisal of life-course science and research. Pediatrics. 2009;124:S203-11. PDF>>
Supplemental:
Fine A et al. A new agenda for MCH policy and programs: Integrating a life course perspective. MCHB/HRSA; 2010 PDF>>
2010
December 8, 2010: Eighteenth Journal Club
The Texas Blood Spot Incineration and Biobanking Consent
Time: 11AM - Noon
Location: CCSR 4205
Facilitator: Sally Tobin, PhD
Readings:
Beskow et al. Developing a simplified consent form for biobanking. PLoS ONE, 2010. 5(10): e13302. PDF >>
Melas et al. Examining the public refusal to consent to DNA biobanking: empirical data from a Swedish population-based study. J Med Ethics, 2010. 36(2):93-8. Abstract >>
Roser MA. State agency swaps babies' blood for supplies. Statesman, 10 May 2010. Full Text >>
Waldo A. The Texas newborn bloodspot saga has reached a sad - and preventable - conclusion. Genomics Law Report, 16 March 2010. Full Text >>
Root J. Texas officials agree to destroy babies' blood samples after settling lawsuit. Texas Civil Rights Project. Full Text >>
Additional Materials: Flyer (PDF)
November 10, 2010: Seventeenth Journal Club
The War over the "Warrior Gene" Hypothesis: Lessons for Behavioral Genetics Research
Time: 11AM - Noon
Location: CCSR 4205
Facilitator: Lauren Milner, PhD
Readings:
Lea R and Chambers G. Monoamine oxidase, addiction, and the "warrior" gene hypothesis. N Z Med J, 2007. 120(1250):U2441. Full Text >>
Wensley D and King M. Scientific responsibility for the dissemination and interpretation of genetic research: lessons from the ''warrior gene'' controversy. J Med Ethics, 2008. 34: 507-509. Abstract >>
Additional Materials: Flyer (PDF)
October 13, 2010: Sixteenth Journal Club
Evaluating Genomic Tests for Translation to Clinical Practice: EGAPP and the Example of Warfarin
Time: 11AM - Noon
Location: CCSR 4205
Facilitator: Mildred Cho, PhD
Readings:
Deverka P.A., Vernon J., McLeod H.L. Economic opportunities and challenges for pharmacogenomics. Annu Rev Pharmacol Toxicol, 2010. 50:423-37. Abstract >>
Roth J.A., Garrison L.P., Burke W., Ramsey S.D., Carlson R., Veenstra D.L. Stakeholder Perspectives on a Risk-Benefit Framework for Genetic Testing. Public health genomics, 2010. [Epub ahead of print]. Abstract >>
Teutsch S.M., Bradley L.A., Palomaki G.E., Haddow J.E., Piper M., Calonge N., et al. The Evaluation of Genomic Applications in Practice and Prevention (EGAPP) Initiative: methods of the EGAPP Working Group. Genet Med, 2009. 11(1):3-14. Abstract >>
Veenstra D.L., Roth J.A., Garrison L.P., Ramsey S.D., Burke W. A formal risk-benefit framework for genomic tests: Facilitating the appropriate translation of genomics into clinical practice. Genet Med, 2010. 12(11). Abstract >>
Additional materials: Flyer (PDF)
May 19, 2010: Fifteenth Journal Club
Who Will Steward Personal Genome Interpretation in the "Zero Dollar Genome" Era?
Time: 10:30AM - Noon
Location: Clark Center S362
Facilitator: Keyan Salari
Co-sponsored by: Stanford's Department of Genetics
Readings:
Ashley E.A., Butte A.J., Wheeler M.T., Chen R., Klein T.E., Dewey F.E., et al. Clinical assessment incorporating a personal genome. Lancet, 2010. 375(9725):1525-35. Abstract >>
Haspel R.L., Arnaout R., Briere L., Kantarci S., Marchand K., Tonellato P., et al. A call to action: training pathology residents in genomics and personalized medicine. Am J Clin Pathol, 2010. 133(6):832-4. Abstract >>
Salari K. The dawning era of personalized medicine exposes a gap in medical education. PLoS Med, 2009. 6(8): e1000138. Full Text >>
Additional materials: Flyer (PDF)
April 21, 2010: Fourteenth Journal Club
Genome-wide Association Studies:
What are the Follow-up Choices and Their Implications?
Time: 10:30AM - Noon
Location: Clark Center S362
Facilitator: Chiara Sabatti, PhD
Co-sponsored by: Stanford's Department of Genetics
Readings:
Cantor R.M., Lange K., and J.S. Sinsheimer. Prioritizing GWAS results: A review of statistical methods and recommendations for their application. Am J Hum Genet, 2010. 86(1):6-22. Abstract >>
Dickson S.P., Wang K., Krantz I., Hakonarson H., and D.B. Goldstein. Rare variants create synthetic genome-wide associations. PLoS Biol, 2010. 8(1):e1000294. Abstract >>
Manolio T.A., Collins F.S., Cox N.J., Goldstein D.B., Hindorff L.A., Hunter D.J., et al. Finding the missing heritability of complex diseases. Nature, 2009. 461(7265):747-53. Abstract >>
Additional materials: Flyer (PDF)
March 17, 2010: Thirteenth Journal Club
Sequencing Archbishop Tutu:
The Ethical Dimensions of Whole Genome Sequencing in Africa
Time: 10:30AM - Noon
Location: Clark Center S362
Facilitator: Nanibaa' Garrison, PhD
Co-sponsored by: Stanford's Department of Genetics
Readings:
Ledford H. Africa yields two full human genomes. Nature, 2010. 463(7283):857. Abstract >>
Schuster S.C., Miller W., Ratan A., Tomsho L.P., Giardine B., Kasson L.R., et al. Complete Khoisan and Bantu genomes from southern Africa. Nature, 2010. 463(7283):943-7. Abstract >>
Additional materials: Flyer (PDF)
February 17, 2010: Twelfth Journal Club
Do Personalized Genomic Results Lead to Behavior Change?
Time: 10:30AM - Noon
Location: Clark Center S362
Facilitator: Kelly Ormond, MS, CGC
Co-sponsored by: Stanford's Department of Genetics
Readings:
Chao S., Roberts J.S., Marteau T.M., Silliman R., Cupples L.A., and R.C. Green. Health Behavior changes after genetic risk assessment for Alzheimer disease: the REVEAL study. Alz Dis Assoc Disord, 2008. 22(1):94-7. Abstract >>
McBride C.M., Koehly L.M., Sanderson S.C., and K.A. Kaphingst. The behavioral response to personalized genetic information: will genetic risk profiles motivate individuals and families to choose more healthful behaviors? Annu Rev Public Health, 2010. 31:13.1-13.15. Abstract >>
Additional materials: Flyer (PDF)
January 20, 2010: Eleventh Journal Club
Understanding and Responding to Stem Cell Tourism
Time: 10:30AM - Noon
Location: Clark Center S363
Facilitator: CJ Murdoch, L.L.B.
Co-sponsored by: Stanford's Department of Genetics
Readings:
Regenberg A.C., Hutchinson L.A., Schanker B., and D.J. Mathews. Medicine on the fringe: stem cell-based interventions in advance of evidence. Stem Cells, 2009. 27(9):2312-9. Abstract >>
Additional materials: Flyer (PDF)
2009
December 16, 2009: Tenth Journal Club
Maternal Serum Cell Free Fetal DNA Testing:
The Coming Explosion in Prenatal Genetic Testing?
Time: 10:30-11:30AM
Location: Clark Center S363
Facilitator: Hank Greely, J.D.
Co-sponsored by: Stanford's Department of Genetics
Readings:
Fan H.C., Blumenfeld Y.J., Chitkara U., Hudgins L., and S.R. Quake. Noninvasive diagnosis of fetal aneuploidy by shotgun sequencing DNA from maternal blood. Proc Natl Acad Sci U S A, 2008. 105(42):16266-71 Full Text >>
Additional materials: Flyer (PDF)
November 18, 2009: Ninth Journal Club
Research 2.0: Social Networking and Direct-to-Consumer Genomics
Time: 10:30-11:30AM
Location: Clark Center S363
Facilitator: Sandra Lee, Ph.D.
Co-sponsored by: Stanford's Department of Genetics
Readings:
Lee S.S. and L. Crawley. Research 2.0: Social networking and direct-to-consumer (DTC) genomics. Am J Bioet, 2009. 9(6):35-44. Abstract >>
Lee S.S. and L. Crawley. Response to open peer commentaries on "Research 2.0: Social networking and direct-to-consumer (DTC) genomics." Am J Bioet, 2009. 9(6):W1-W3. Citation >>
Additional materials: Flyer (PDF)
September 23, 2009: Eighth Journal Club
Attitudes Towards Use of Personal Genomics
Time: 10:30-11:30AM
Location: Clark Center S362
Facilitator: Mildred Cho, Ph.D.
Co-sponsored by: Stanford's Department of Genetics
Readings:
Hathaway F., Burns E., and H. Ostrer. Consumers' desire towards current and prospective reproductive genetic testing. J Genet Couns, 2009. 18(2):137-46. Abstract >>
McGuire A.L., Diaz C.M., Wang T., and S. G. Hilsenbeck. Social Networkers' Attitudes Toward Direct-to-Consumer Personal Genome Testing. Am J Bioeth, 2009. 9(6-7):3-10. Abstract >>
Additional materials: Flyer (PDF)
May 20, 2009: Seventh Journal Club
Research in a Post-Mendelian World:
What is the Significance of the Limitations in Genome-Wide Association Studies?
Time: 10:30-11:30AM
Location: Clark Center S363
Facilitator: David Magnus, Ph.D.
Co-sponsored by: Stanford's Department of Genetics
Readings:
All Readings can be found in the April 23, 2009 Issue of the New England Journal of Medicine.
Goldstein D.B. Common Genetic Variation and Human Traits.
Hardy J. and A. Singleton. Genomewide Association Studies and Human Disease.
Hirschhorn J.N. Genomewide Association Studies — Illuminating Biologic Pathways.
Kraft P. and D.J. Hunter. Genetic Risk Prediction — Are We There Yet?
Additional materials: Flyer (PDF)
April 15, 2009: Sixth Journal Club
Trusting Your Gut: Links Between Microbiome and Weight
Time: 10:30-11:30AM
Location: Clark Center S363
Facilitator: Katie Shelef
Co-sponsored by: Stanford's Department of Genetics
Readings:
Turnbaugh P.J., Hamady M., Yatsunenko T., Cantarel B.L., Duncan A., Ley R.E., et al. A core gut microbiome in obese and lean twins. Nature, 2009. 457:480-84. Full Text >>
Turnbaugh P.J., Ley R.E., Mahowald M.A., Magrini V., Mardis E.R. and J.I. Gordon. An obesity-associated gut microbiome with increased capacity for energy harvest. Nature, 2006. 444:1027-131. Full Text >>
Additional materials: Flyer (PDF)
March 18, 2009: Fifth Journal Club
Politicized Science and Scientific Politics:
the Funding Behind Genetics and Bioethics
Time: 10:30-11:30AM
Location: Clark Center S363
Facilitator: Martine Lappé
Co-sponsored by: Stanford's Department of Genetics
Readings:
Editorial: Science and Stem Cells. 9 Mar 2009. NYTimes.com. Full Text >>
The Opinionator: Stem Cell Squabble. 11 Mar 2009. NYTimes.com. Full Text >>
Harris G. and K. Chang. Beaker-Ready Projects? Colleges Have Quite a Few. 23 Feb 2009. NYTimes.com. Full Text >>
Pollack A. Google Co-Founder Backs Vast Parkinson's Study. 11 Mar 2009. NYTimes.com. Full Text >>
Rugnetta M. and M. Peroski. A life sciences crucible: stem cell research and innovation done responsibly and ethically. Center for American Progress, 2009. Full Text>>
Additional materials: Flyer (PDF)
February 18, 2009: Fourth Journal Club
Genetics, Ethics and the Scholars Who Integrate the Two:
An Overview of CIRGE Projects
Time: 10:30-11:30AM
Location: Clark Center S362
Co-sponsored by: Stanford's Department of Genetics
Readings: Recent publications listed under CIRGE News on this website's homepage and detailed below.
Caulfield T, et al. Race and ancestry in biomedical research: exploring the challenges. Genome Med, 2009. 1:8. Full Text>>
Cho M.K. Translating genomics into the clinic: moving to the post-Mendelian world. Genome Med, 2009. 1:7. Full Text>>
Lee S.S and A. Mudaliar. Racing forward: the Genomics and Personalized Medicine Act. Science, 2009. 323(6912):342. Full Text>>
Magnus D., Cho M.K., Cook-Deegan R. Direct-to-consumer genetic tests: beyond medical regulation? Genome Med, 2009. 1:17. Full Text>>
Ormond K.E., Cirino A.L, Helenowski I.B., Chisholm R.L. and W.A. Wolf. Assessing the understanding of biobank participants. Am J Med Genet A, 2009. 149A(2):188-98. Full Text>>
Additional materials: Flyer (PDF)
January 21, 2009: Third Journal Club
Disability, Genetics and Defining Disease
Time: 10:30-11:30AM
Location: SCBE Conference Room (701A Welch Rd, Suite 1113)
Facilitator: Mildred Cho, Ph.D.
Co-sponsored by: Stanford's Department of Genetics
Readings:
Buchanan A. 2007. Institutions, Beliefs and Ethics: Eugenics as a Case Study. J Polit Philos. 15(1):22-45. Full Text (PDF)
Scully J.L. 2008. Disability and genetics in the era of genomic medicine. Nat Rev Genet. 9(10): 797-802 Full Text >>
Scully JL. 2004. What is a disease? EMBO Rep. 5(7): 650-3. Full Text >>
Additional materials: Flyer (PDF)
2008
November 19, 2008: Second Journal Club
Ethical Issues in Synthetic Biology
Time: 10:30-11:30AM
Location: Clark Center S362
Co-sponsored by: Stanford's Department of Genetics
Readings:
Balmer A. and P. Martin. Synthetic Biology: Social and Ethical Challenges. Review (PDF)
Parens E., Johnston J. and J. Moses. 2008. Ethics: Do We Need "Synthetic Bioethics"? Science. 321(5895):1449 Full Text>>
Additional materials: Flyer (PDF)
October 15, 2008: First Journal Club
Privacy, Genetics and the Public Interest: Should we Know the DNA of our Political Candidates?
Time: 10:30AM-Noon
Location: Beckman 230
Facilitator: Teneille Brown, J.D.
Co-sponsored by: Stanford's Department of Genetics
Readings:
Brin, Sergey. 18 Sept 2008. LRRK2.Too. Blog >>
Brown, Teneille. 2008. Genetic Testing for Presidential Health? Wellness can be Key to Effective Decision Making. Science Progress.Full Text>>
Homer N., Szelinger S., Redman M., Duggan D., Tembe W., et al. (2008) Resolving Individuals Contributing Trace Amounts of DNA to Highly Complex Mixtures Using High-Density SNP Genotyping Microarrays. PLoS Genet 4(8): e1000167. doi:10.1371/journal.pgen.1000167 Full Text>>
Additional materials: Flyer (PDF)