tag:blogger.com,1999:blog-77826128184630906582024-03-13T11:01:49.612-07:00Narrative GeneticsNarrative genetics is the exploration of how genetic understanding and belief are expressed through story, and of the impact of those narratives.Marsha Hursthttp://www.blogger.com/profile/00251294735288457393noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-7782612818463090658.post-84510606509117762542010-04-21T11:21:00.000-07:002010-04-21T17:00:05.693-07:00Narrative Genetics Seminar: Making Sense of the Increased Prevalence of Autism?<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHmnIKEakaHuXyKullf3cXvOwjUBokDO4Sh8naGbBhNyPS_bUbk8ZIgYKaMZFFw2tE_fhqbqOP7kOEN13mtoc7tALGRWHANmq8I64uvaaZbRkDmYUzJLgGqUt-zcC1ApUc7uB9xeYpLww/s1600/P+Bearman+photo.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 132px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHmnIKEakaHuXyKullf3cXvOwjUBokDO4Sh8naGbBhNyPS_bUbk8ZIgYKaMZFFw2tE_fhqbqOP7kOEN13mtoc7tALGRWHANmq8I64uvaaZbRkDmYUzJLgGqUt-zcC1ApUc7uB9xeYpLww/s200/P+Bearman+photo.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5462744642379605138" /></a><br />NEW DATE!! Monday, May 3 (changed from May 6)<br />Guest Presenter, PETER BEARMAN, Columbia University. <br /><br />Director of the Lazarsfeld Center for the Social Sciences, the Cole Professor of Social Science, and Co-Director of the Health & Society Scholars Program.<br /><br />6-8pm, Room 801, International Affairs Building, Columbia U<br /><br />Peter Bearman was the founding director of ISERP, serving from the Institute's launch in 2000 until 2008. A recipient of the NIH Director's Pioneer Award in 2007, Bearman is currently investigating the social determinants of the autism epidemic. A specialist in network analysis, Bearman co-designed the National Longitudinal Study of Adolescent Health and has used the data extensively for research on topics including adolescent sexual networks, networks of disease transmission, and genetic influences on same-sex preference. He has also conducted research in historical sociology, including Relations into Rhetorics: Local Elite Social Structure in Norfolk, England, 1540-1640 (Rutgers, 1993). He is the author of Doormen (University of Chicago Press, 2005).<br /><br />This event is free and open to the public. For details on schedules, locations, speakers, and topics, visit our full calendar of events at www.iserp.columbia.edu.The Institute for Social and Economic Research and Policy (ISERP) is the research arm of the social sciences at Columbia University. Its core mission is to catalyze and produce pioneering social science research and to shape public policy by integrating knowledge and methods across the social science disciplines.Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-28523079992775103182010-04-05T20:03:00.000-07:002010-04-05T20:13:30.891-07:00Breast Cancer Gene Patents InvalidatedI just received a link to today's <a href="http://www.ourbodiesourblog.org/blog/2010/04/breast-cancer-gene-patents-invalidated">Our Bodies Ourselves blog post </a>announcing a decision by a judge in the United States District Court for the Southern District of New York in Manhattan that invalidates the patents held by Myriad Genetics for the BRCA1 and BRCA2 genes. The US Judge said in the ruling that the "isolated DNA is not markedly different from native DNA as it exists in nature” and thus aren’t novel enough to qualify for patent protection. OBOS had joined the suit brought last summer by the ACLU against Myriad, the US Patent and Trademark Office and the University of Utah Research Foundation. Read the blog post for links to the decision and more information about the lawsuit.Marsha Hursthttp://www.blogger.com/profile/00251294735288457393noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-20920959707654433272010-02-24T18:36:00.000-08:002010-02-24T18:40:04.332-08:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3Ianry62mqJ-P3StZnx5YwjPnMqxddAtFoux-JsqXmqLhHfRgCEptJCmQ57ZzoXD3RKHXmzl3nv7fDslyXt8qmSol5sJahAhqVqcIpmZBY14XyEZ4pRVDrM8Q_egPjQ4mZYiUvjodd388/s1600-h/Rachel+Adams+talk.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 215px; height: 166px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3Ianry62mqJ-P3StZnx5YwjPnMqxddAtFoux-JsqXmqLhHfRgCEptJCmQ57ZzoXD3RKHXmzl3nv7fDslyXt8qmSol5sJahAhqVqcIpmZBY14XyEZ4pRVDrM8Q_egPjQ4mZYiUvjodd388/s400/Rachel+Adams+talk.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5442005126827840738" /></a><br />Rachel Adams, a participant in our Narrative Genetics seminar, will be giving a talk on disability and prenatal testing at Columbia on March 9. All are welcome.Marsha Hursthttp://www.blogger.com/profile/00251294735288457393noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-18917702744223726162010-02-15T11:12:00.000-08:002010-02-22T07:02:39.476-08:00Rescheduled: GENES AND PLAYS<span style="font-size:130%;">April 19, 2010</span><br /><br />6:10-8pm, Case Lounge, Columbia University School of Law<br /><http://www.columbia.edu/about_columbia/map/greene.html><br /><br /><span style="FONT-WEIGHT: bold">Genes and Plays</span>: Using theatre to enhance understanding of the ethical, legal, and social implications of genetics. Scenes from the recent play "<span style="FONT-WEIGHT: bold">Distracted</span>" will be used to enhance discussion on the implications of ADHD on the child, parents and society.<br /><br /><span style="FONT-WEIGHT: bold">KAREN H. ROTHENBERG</span><br />Karen H. Rothenberg, J.D., M.P.A., is the Marjorie Cook Professor of Law, founding Director of the Law & Health Care Program, and she served as Dean of the University of Maryland School of Law from 1999-2009. Professor Rothenberg is a leading national expert on legal issues in health care. She is spending her current sabbatical doing research as a Scholar-in-Residence at Columbia Law School and at Columbia’s Center for the Study of Law and Culture, as well as at the Berman Institute of Bioethics at Johns Hopkins University.<br /><br /><span style="FONT-WEIGHT: bold">JEFF SELTZER</span><br />Jeff Seltzer, Ph.D., J.D., is a child psychologist and mental health coordinator for the Head Start and Pre-Kindergarten programs of the Montgomery County, Maryland public schools. He received his J.D. from Georgetown University and his Ph.D. from the University of Virginia. He lectures widely on the delivery of mental health services and the legal rights of children with disabilities and he served as the Expert Mental Health Consultant at the University of Maryland, providing region-wide training and technical assistance to Head Start programs.<br /><br />Readings for the seminar will be available on the public Narrative Genetics Google Site, http://sites.google.com/site/narrativegenetics/Home<br /><br /><span style="font-size:85%;">The Narrative Genetics seminar at Columbia is sponsored by ISERP http://iserp.columbia.edu/workshops/genetics. The seminar is open to faculty, students, and others in the Columbia University community and in the New York metropolitan area. Presenters discuss work in progress and welcome participation in the discussion.</span>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-56245592371840731612010-02-12T19:50:00.000-08:002010-02-12T20:12:47.325-08:00Autism Battlefield--Ageism, Clusters, DiagnosisAutism, it seems, is a contemporary paradigmatic stadium in which genetics, parenting, social factors, environmental toxins compete for causal authority. This past month, autism—or autism spectrum disorder as the draft <a href="http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#">DSM-V proposes</a> to redefine the condition--has received a great deal of attention<em>. </em>In 1998 <em>The Lancet</em> published a study based on research by Andrew Wakefield that linked autism in the UK to the MMR vaccine. As a result of the study’s publication, many parents in the UK refused to have their children vaccinated. In January of this year a <a href="http://www.nytimes.com/aponline/2010/01/28/world/AP-EU-Britain-Autism-Doctor.html?_r=1">British panel</a> found that Wakefield had failed to disclose a conflict of interest—as a paid advisor to attorneys for parents suing the vaccine manufacturer--and that the study itself was conducted without adherence to proper ethical standards of consent. Following the panel’s report, <a href="http://www.nytimes.com/2010/02/03/health/research/03lancet.html?scp=2&sq=autism&st=cse"><em>The Lancet</em> </a>retracted the 1998 paper from publication. Meanwhile, a number of recent studies have focused on rates of autism in California. The online journal <em>Autism Research</em> examined yet again the question of whether and how parental age has contributed to the increase rates of autism. A 10 year <a href="http://www3.interscience.wiley.com/journal/123275763/abstract">study of births in California </a>concluded that maternal and paternal age each contribute independently to higher rates of autism, accounting for 4.6% of the increase over the decade under study. Two other studies found clusters of autism in California cities. One, out of <a href="http://www.scientificamerican.com/article.cfm?id=autism-clusters-californiahighly-educated-parents">UC Davis </a>found 10 clusters in the San Francisco and Los Angeles areas, and associated these higher rates with high rates of parental education. The other study of autism prevalence in California was done by <a href="http://news.columbia.edu/research/1906">Columbia University </a>based researchers led by Peter Bearman, Jonathan Cole Professor of the Social Sciences and our May 6 Narrative Genetics seminar guest. This group found a primary cluster in the West Hollywood area and secondary clusters in other parts of LA. While they did not attempt to identify cause, they linked higher rates to local variables, such as environmental toxins or social influences. We look forward to discussing all this in May.Marsha Hursthttp://www.blogger.com/profile/00251294735288457393noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-954483329305803362010-02-03T19:39:00.000-08:002010-02-15T11:32:12.259-08:00In Fashion and Style: Turner Syndrome<span style="line-height: 15px;font-size:10px;" class="Apple-style-span" > <h1 style="line-height: 1.08em; margin: 0px 0px 8px; color: rgb(0, 0, 0); font-weight: normal;" class="articleHeadline"><span class="Apple-style-span" style="font-size:large;">Alone on a Path Shared by Many</span></h1><h1 style="line-height: 1.08em; margin: 0px 0px 8px; color: rgb(0, 0, 0); font-weight: normal;" class="articleHeadline"><nyt_headline type=" " version="1.0"><span class="Apple-style-span" style="font-size:large;"><span style="line-height: 38px;font-family:arial,helvetica,sans-serif;font-size:medium;" class="Apple-style-span" >By ALLISON AMEND</span></span></nyt_headline></h1></span><span style="line-height: 12px;font-family:arial,helvetica,sans-serif;" class="Apple-style-span" ><span class="Apple-style-span" style="font-size:medium;">Published: January 29, 2010. <a href="http://www.nytimes.com/2010/01/31/fashion/31love.html?pagewanted=1&sq=modern%20love&st=cse&scp=2">An article about love, infertility, text message break ups.</a> </span></span>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-75886795154972846652010-02-03T19:25:00.000-08:002010-02-03T19:37:45.051-08:00NY Times reviews Skloot's “The Immortal Life of Henrietta Lacks”<span class="Apple-style-span" style=" line-height: 22px; "><span class="Apple-style-span" style="font-size: medium;">"A thorny and provocative book about cancer, racism, scientific ethics and crippling poverty, “The Immortal Life of Henrietta Lacks” also floods over you like a narrative dam break, as if someone had managed to distill and purify the more addictive qualities of “Erin Brockovich,” “Midnight in the Garden of Good and Evil” and “The Andromeda Strain.” More than 10 years in the making, it feels like the book Ms. Skloot was born to write. It signals the arrival of a raw but quite real talent." - Dwight Garner</span></span><div><span class="Apple-style-span" style=" line-height: 22px;"><span class="Apple-style-span" style="font-size: medium;">read full review here:</span></span></div><div><span class="Apple-style-span" style=" line-height: 22px;"><span class="Apple-style-span" style="font-size: medium;">http:</span><a href="http://www.nytimes.com/2010/02/03/books/03book.html?scp=1&sq=skloot&st=cse"><span class="Apple-style-span" style="font-size: medium;">//www.nytimes.com/2010/02/03/books/03book.html?scp=1&sq=skloot&st=cse</span></a></span></div><div><span class="Apple-style-span" style=" line-height: 22px;"><span class="Apple-style-span" style="font-size: medium;"><br /></span></span></div><div><span class="Apple-style-span" style=" line-height: 22px;"><span class="Apple-style-span" style="font-size: medium;"><br /></span></span></div><div><span class="Apple-style-span" style=" line-height: 22px;"><span class="Apple-style-span" style="font-size: medium;">In the Health section, Denise Grady writes: "</span><span class="Apple-style-span" style=" color: rgb(51, 51, 51); "><span class="Apple-style-span" style="font-size: medium;">Fifty years after Henrietta Lacks died of </span><a href="http://health.nytimes.com/health/guides/disease/cervical-cancer/overview.html?inline=nyt-classifier" title="In-depth reference and news articles about Cervical Cancer." style="color: rgb(0, 66, 118); text-decoration: underline; "><span class="Apple-style-span" style="font-size: medium;">cervical cancer</span></a><span class="Apple-style-span" style="font-size: medium;"> in the “colored” ward at Johns Hopkins Hospital, her daughter finally got a chance to see the legacy she had unknowingly left to science. A researcher in a lab at Hopkins swung open a freezer door and showed the daughter, Deborah Lacks-Pullum, thousands of vials, each holding millions of cells descended from a bit of tissue that doctors had snipped from her mother’s cervix."</span></span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style=" line-height: 22px;"><span class="Apple-style-span" style="font-size: medium;">read full story here:</span></span></span></div><div><span class="Apple-style-span" style=" line-height: 22px;"><a href="http://www.nytimes.com/2010/02/02/health/02seco.html?scp=3&sq=skloot&st=cse"><span class="Apple-style-span" style="font-size: medium;">http://www.nytimes.com/2010/02/02/health/02seco.html?scp=3&sq=skloot&st=cse</span></a></span></div><div><span class="Apple-style-span" style="font-size:130%;"><span class="Apple-style-span" style=" line-height: 22px; font-size:15px;"><br /></span></span></div>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-17711604616573472752010-02-03T18:55:00.000-08:002010-02-03T19:30:43.697-08:00Karen H. Rothenberg, J.D., M.P.A.<p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-family:'times new roman';"><span class="Apple-style-span" style="font-size:medium;">Fordham Law Lincoln Center presents the </span></span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-family:'times new roman';"><span class="Apple-style-span" style="font-size:medium;">2010 Robert L. Levine Lecture</span></span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 11.0px 'Lucida Grande'"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="font-family:'courier new';">FROM EUGENICS TO THE "NEW" GENETICS: THE PLAY'S THE THING</span></span></span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 11.0px 'Lucida Grande'"><br /></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 11.0px 'Lucida Grande'"><span class="Apple-style-span" style=" ;font-family:Helvetica, serif;font-size:15px;"><span style="font: normal normal normal 18px/normal Helvetica; letter-spacing: 0px; ">Wednesday, March 10, 2010 </span><span style="font: normal normal normal 25.5px/normal Helvetica; letter-spacing: 0px; ">| </span><span style="font: normal normal normal 18px/normal Helvetica; letter-spacing: 0px; ">5:00 p.m.</span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 11.0px 'Lucida Grande'; min-height: 13.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="font: 14.0px Helvetica; letter-spacing: 0.0px"><b>Karen H. Rothenberg</b>, </span><span style="letter-spacing: 0.0px">J.D., M.P.A. Marjorie Cook Professor of Law, University of Maryland School of Law Scholar-in-Residence and Senior Sabbatical Fellow, Center for the Study of Law and Culture, Columbia Law School Visiting Professor, Berman Institute of Bioethics, John Hopkins University.</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 13.0px Helvetica"><span style="letter-spacing: 0.0px">What can plays tell us about the power of hereditary science and the power of the state? How does the work of playwrights, capturing the era of eugenics and the advent of the Human Genome Project, dramatize and enhance our understanding of the implications of genetics on race, class, gender, sexuality, and disability?</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 13.0px Helvetica; min-height: 16.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 13.0px Helvetica"><span style="letter-spacing: 0.0px">This lecture will examine how plays both reflect and try to influence public opinion and social policy over time. The Fordham Law Review will publish the contents of the lecture in the fall of 2010.</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 15.0px Helvetica"><br /></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 15.0px Helvetica"><span style="letter-spacing: 0.0px">Fordham Law School, 140 West 62nd Street </span><span style="font: 21.2px Helvetica; letter-spacing: 0.0px"> </span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 15.0px Helvetica"><span style="font: 21.2px Helvetica; letter-spacing: 0.0px"></span><span style="letter-spacing: 0.0px">New York, NY 10023</span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 15.0px Helvetica"><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 15.0px Helvetica"><span style="letter-spacing: 0.0px">Registration encouraged: <a href="http://law.fordham.edu/levinelecture">law.fordham.edu/levinelecture</a></span></p>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-68980228276434268162010-01-30T15:15:00.000-08:002010-01-30T15:17:33.531-08:00Applications Being Accepted for Young Scholar Award in Perinatal Bioethics<span class="Apple-style-span" style=" border-collapse: collapse; font-family:arial, sans-serif;font-size:13px;"><p class="MsoNormal" align="center" style="text-align: left;margin-top: 0px; margin-right: 0px; margin-bottom: 6pt; margin-left: 0px; "> </p><p class="MsoNormal" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; "><span style=" ;font-size:10pt;"><b>The American Society for Bioethics and Humanities</b> (ASBH) and the <b>March of Dimes</b> are pleased to announce the annual <b>Young Scholar Award in Perinatal Bioethics</b>. </span></p><p class="MsoNormal" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; "><br /></p><p class="MsoNormal" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; "><b><span style=" ;font-size:10pt;">Who is eligible?</span></b><span style=" ;font-size:10pt;"> To be eligible for this award, applicants must be early in their career development, including those who are actively enrolled in graduate school, post-doctoral programs or no higher in their career achievement than the assistant professorship level. </span></p><p class="MsoNormal" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; "><span style=" ;font-size:10pt;">Applicants should submit proposals in the 'Perinatal Ethics' topic category in the ASBH Call for Proposals. Proposals that would fall into the perinatal ethics topic category include but are not limited to topics such as pre-conception health, reproductive decision making, pregnancy, pre-natal genetic testing, labor and delivery, newborn screening, neonatal decision making and other topics related to the perinatal time frame. Proposals may address clinical decision making, research or other bioethical or humanities-related topics.</span></p><p class="MsoNormal" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; "><br /></p><p class="MsoNormal" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; "><b><span style=" ;font-size:10pt;">Deadline.</span></b><span style=" ;font-size:10pt;"> Submit an abstract to the ASBH Call for Proposals on the ASBH Web site no later than March 3, 2010 at /meetings/annual/<wbr>callguidelines.html. To be considered for this award, submit your proposal under the 'Perinatal Ethics' topic category where indicated. </span></p><p class="MsoNormal" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; "><span style=" ;font-size:10pt;">From those submitted abstracts, a select group of applicants will then be asked to submit a full paper for review by the March of Dimes/ASBH review committee. </span></p><p class="MsoNormal" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; "><br /></p><p class="MsoNormal" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; "><b><span style=" ;font-size:10pt;">The Award.</span></b><span style=" ;font-size:10pt;"> The award will be presented at the ASBH Annual Meeting in October to the applicant whose paper is selected to be of the highest quality and intellectual rigor among the submitted papers. The award winner will receive an honorarium of $1,000 and will present the paper at a plenary session at the ASBH Annual Meeting, which will feature an invited lecture by a distinguished scholar from the field of perinatal ethics.</span></p><p class="MsoNormal" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; "><br /></p><p class="MsoNormal" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; "><span style=" ;font-size:10pt;"> </span></p><p class="MsoNormal" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; "><span style=" ;font-size:10pt;">For more information, please contact Alison Saylor at </span><span style=" ;font-size:10pt;"><a href="mailto:asaylor@Connect2amc.com" target="_blank" style="color: rgb(237, 28, 36); "><span>asaylor@Connect2amc.com</span></a></span><span style=" ;font-size:10pt;"> or Ann Umemoto at </span><span style=" ;font-size:10pt;"><a href="mailto:aumemoto@marchofdimes.com" target="_blank" style="color: rgb(237, 28, 36); "><span>aumemoto@marchofdimes.com</span></a></span><span style=" ;font-size:10pt;"></span></p><p class="MsoNormal" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; "><span style=" ;font-size:11pt;"> </span></p><p class="MsoNormal" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; "><span style=" color: rgb(31, 73, 125); font-size:11pt;"> </span></p></span>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-19677230473145902032010-01-30T15:11:00.000-08:002010-01-30T15:14:21.841-08:00NARRATIVE GENETICS SEMINAR: Thursday, February 25<span class="Apple-style-span" style=" border-collapse: collapse; font-family:arial, sans-serif;font-size:13px;"><div><br /></div><b><span class="Apple-style-span" style="font-size:large;">The Social Life of DNA</span></b><br /><br />6-8pm, Room 801, International Affairs Building<br /><a href="http://www.columbia.edu/about_columbia/map/international_affairs.html" target="_blank" style="color: rgb(237, 28, 36); ">www.columbia.edu/about_<wbr>columbia/map/international_<wbr>affairs.html</a><br /><br />The Social Life of DNA: Traditional and genetic 'root-seeking' and the implications of these practices for contemporary understandings of race and ethnicity, diaspora, ancestry, and memory. <b>Alondra Nelson, Ph.D</b>., Columbia University, Sociology. <a href="http://www.sociology.columbia.edu/fac-bios/nelson/faculty.html" target="_blank" style="color: rgb(237, 28, 36); ">http://www.sociology.<wbr>columbia.edu/fac-bios/nelson/<wbr>faculty.html</a><br /><br /><b>Professor Nelson</b> joined the Columbia faculty in July 2009 after teaching sociology and African American studies at Yale. She will talk about aspects of her current project, “Reconciliation Projects: Slavery, Memory and the Social Life of DNA,” which traces how claims about race and ancestry are marshaled together with genetic analysis in a range of social ventures, including family genealogy and ancestry, reparations politics and the formation of public and collective memory. “Bio Science: Genetic Ancestry Testing and the Pursuit of African Ancestry” (2008) is a recent publication of Nelson’s addressing the effects and implications of direct-to-consumer genetic testing. It is available on the Narrative Genetics Google site <a href="http://sites.google.com/site/narrativegenetics/" target="_blank" style="color: rgb(237, 28, 36); ">http://sites.google.com/site/<wbr>narrativegenetics/</a> . Watch the site for other readings.<br /><br />The Narrative Genetics seminar at Columbia is sponsored by ISERP <a href="http://iserp.columbia.edu/workshops/genetics" target="_blank" style="color: rgb(237, 28, 36); ">http://iserp.columbia.edu/<wbr>workshops/genetics</a>. The seminar is open to faculty, students, and others in the Columbia University community and in the New York metropolitan area. Presenters discuss work in progress and welcome participation in the discussion.</span>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-83614836488237276162010-01-28T10:42:00.000-08:002010-01-28T10:50:06.389-08:00SEMINAR ON GENETIC DISCRIMINATION 2/9/2010<span class="Apple-style-span" style=" border-collapse: collapse; font-family:arial, sans-serif;font-size:13px;"><div><br /></div>Division of Law, Ethics, and Psychiatry<br />Department of Psychiatry<br />Columbia University Medical Center<br />Seminar series on Legal and Ethical Issues in Psychiatry and General<br />Medicine<br /><br />Jessica L. Roberts, JD<br />Associate-in-Law, Columbia Law School<br />Assistant Professor of Law (Fall 2010), University of Houston Law Center<br /><br />Bahrad Sokhansanj, PhD<br />2nd year student, Columbia Law School<br /><br />Introducing the Genetic Information Nondiscrimination Act: Civil Rights in the Post-Genome Era<br /><br />Tuesday, Feb. 9, 2010<br />4:00 - 5:15 p.m.<br />Room 3002<br />New York State Psychiatric Institute<br /><br />Sequencing the human genome provides a powerful tool for advancing personalized medicine but, at the same time, brings with it the potential for discrimination. Despite few reports of genetic discrimination, the public remains wary of genetic tests, fearful that a result showing the risk for disease and disability would lead to being denied health insurance and losing their job. To address these fears, scientists and biotechnology industry lobbyists advocated federal legislation to prevent genetic discrimination. After almost thirteen years of legislative debate, Congress passed the Genetic Information Nondiscrimination Act (GINA) in May 2008.<br />GINA prohibits health insurers and employers from discriminating on the basis of genetic information. We will describe the role of scientists in shaping GINA, its current protections, and the implications of enacting fear-based antidiscrimination legislation.<br /><br />Upcoming Speakers<br /><br />March 16: Judge Donald Volkert, Superior Court of NJ, Passaic Vicinage<br /><br />April 20: Nancy Dubler, LLB, Albert Einstein College of Medicine, Yeshiva Univ.<br /><br />May 11: Lynn Jansen, PhD, Bioethics Institute, NY Medical College<br /><br />June 15: Forensic Psychiatry Fellows, Dept. of Psychiatry, Columbia University<br /><br />For further information or to convey suggestions about future speakers, contact Paul S. Appelbaum, MD, Director, Division of Law, Ethics, and Psychiatry, Department of Psychiatry, at 212-543-4184 or <a href="mailto:psa21@columbia.edu" target="_blank" style="color: rgb(237, 28, 36); ">psa21@columbia.edu</a>.<br /><br /></span>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-7094100289797680322010-01-26T08:52:00.000-08:002010-01-26T09:04:09.002-08:00MARCH OF DIMES' Archives Grand Rounds<span class="Apple-style-span" style=" border-collapse: collapse; white-space: pre-wrap; -webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; font-family:arial, sans-serif;font-size:13px;"><b><div><br /></div>Date</b>: Thursday, February 4, 2010</span><div><span class="Apple-style-span" style=" border-collapse: collapse; white-space: pre-wrap; -webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; font-family:arial, sans-serif;font-size:13px;"><b>Time</b>: 12:30 to 1:30 pm</span></div><div><span class="Apple-style-span" style=" border-collapse: collapse; white-space: pre-wrap; -webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; font-family:arial, sans-serif;font-size:13px;"><b>Location</b>: West Conference Room</span><div><span class="Apple-style-span" style=" border-collapse: collapse; white-space: pre-wrap; -webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; font-family:arial, sans-serif;font-size:13px;">March of Dimes</span></div><div><span class="Apple-style-span" style=" border-collapse: collapse; white-space: pre-wrap; -webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; font-family:arial, sans-serif;font-size:13px;">1275 Mamaroneck Avenue</span></div><div><span class="Apple-style-span" style=" border-collapse: collapse; white-space: pre-wrap; -webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; font-family:arial, sans-serif;font-size:13px;">White Plains, NY 10605</span></div><div><span class="Apple-style-span" style=" border-collapse: collapse; white-space: pre-wrap; -webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; font-family:arial, sans-serif;font-size:13px;"><b>Speaker:</b> Rebecca Skloot</span></div><div><span class="Apple-style-span" style=" border-collapse: collapse; white-space: pre-wrap; -webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; font-family:arial, sans-serif;font-size:13px;"><b>Title</b>: The Immortal Life of Henrietta Lacks: The Story of HeLa Cells</span></div><div><span class="Apple-style-span" style="font-family:arial, sans-serif;"><span class="Apple-style-span" style="border-collapse: collapse; white-space: pre-wrap; -webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;font-size:-webkit-xxx-large;"><br /></span></span></div><div><span class="Apple-style-span" style=" border-collapse: collapse; white-space: pre-wrap; -webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; font-family:arial, sans-serif;font-size:13px;"><b>Rebecca Skloot</b> is an award-winning science writer in the subjects of science and medicine. She teaches creative nonfiction in the MFA program at the University of Memphis. Her articles and essays have appeared in the New York Times, NY Times Magazine, Discover Magazine, and other magazines and journals. Her new book to be released in February, The Immortal Life of Henrietta Lacks, tells the story of the African-American woman Henrietta Lacks and her cell line – known as HeLa cells – that have been used in biomedical research since the 1950s. HeLa cells were instrumental in the development of the Salk polio vaccine and have been used to advance research in in vitro fertilization, cloning, and gene mapping. The bioethical implications of the use of HeLa cells in scientific research have paramount significance today as we grapple with a host of complex issues in medicine, genetics, and reproduction. Ms. Skloot used the resources of the March of Dimes Archives for a portion of her research, and an article accompanying the release of her book appears in the February 2010 issue of Oprah Magazine. For more information, see http://rebeccaskloot.com/. </span><div><span class="Apple-style-span" style="font-family:arial, sans-serif;font-size:100%;"><span class="Apple-style-span" style="border-collapse: collapse; white-space: pre-wrap; -webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;font-size:13px;"><br /></span></span></div></div></div>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com1tag:blogger.com,1999:blog-7782612818463090658.post-31694461253738773522010-01-17T15:39:00.000-08:002010-01-17T15:45:36.134-08:00POSTPONED! January 21 Narrative Genetics seminar. POSTPONED!<p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 13.0px Arial"><br /></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 13.0px Arial"><span style="letter-spacing: 0.0px">The Narrative Genetics Seminar, “Genes and Plays,” scheduled for Thursday, January 21, 2010, has been postponed due to a family emergency. This compelling program of dramatic reading and discussion of the play “Distracted,” led by Karen Rothenberg and Jeff Seltzer, will be rescheduled for later in the spring semester. We will let you know day/date/time ASAP.</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 13.0px Arial; min-height: 15.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 13.0px Arial"><span style="letter-spacing: 0.0px">For those interested, Karen Rothenberg be giving the Levine Lecture at Fordham Law School on “From Eugenics to the ‘New’ Genetics: The Play’s the Thing.” Narrative Genetics seminar participants are welcome to attend. The lecture will be on March 10 in the early evening and we will keep you posted on details. </span></p>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-51791724182316479442010-01-15T07:24:00.000-08:002010-01-17T15:42:43.270-08:00POSTPONED! Narrative Genetics Seminar: Thursday, January 21. POSTPONED!<span class="Apple-style-span" style=" border-collapse: collapse; font-family:arial, sans-serif;font-size:15px;"><span><div><div style="color: rgb(80, 0, 80); "><b><br /></b></div><div style="color: rgb(80, 0, 80); "><b><span class="Apple-style-span" style="font-size:large;">GENES AND PLAYS</span></b><br /><br />6-8pm, Room 801, International Affairs Building<br /><a href="http://www.columbia.edu/about_columbia/map/international_affairs.html" target="_blank" style="color: rgb(237, 28, 36); ">www.columbia.edu/about_<wbr>columbia/map/international_<wbr>affairs.html</a><br /><br /><b>Genes and Plays</b>: Using theatre to enhance understanding of the ethical, legal, and social implications of genetics.<br /><br /></div></div><div style="color: rgb(80, 0, 80); ">Scenes from the recent play "Distracted" will be used to enhance discussion on the implications of ADHD on the child, parents and society.<br /><br /><u>KAREN H. ROTHENBERG</u><br /></div>Karen H. Rothenberg, J.D., M.P.A., is the Marjorie Cook Professor of Law, founding Director of the Law & Health Care Program, and she served as Dean of the University of Maryland School of Law from 1999-2009. Professor Rothenberg is a leading national expert on legal issues in health care. She is spending her current sabbatical doing research as a Scholar-in-Residence at Columbia Law School and at Columbia’s Center for the Study of Law and Culture, as well as at the Berman Institute of Bioethics at Johns Hopkins University. <a href="http://www.law.umaryland.edu/faculty/profiles/faculty.html?facultynum=103" target="_blank" style="color: rgb(237, 28, 36); ">www.law.umaryland.<wbr>edu/faculty/profiles/faculty.<wbr>html?facultynum=103</a> <div style="color: rgb(80, 0, 80); "><br /><br /><u>JEFF SELTZER</u><br />Jeff Seltzer, Ph.D., J.D., is a child psychologist and mental health coordinator for the Head Start and Pre-Kindergarten programs of the Montgomery County, Maryland public schools. He received his J.D. from Georgetown University and his Ph.D. from the University of Virginia. He lectures widely on the delivery of mental health services and the legal rights of children with disabilities and he served as the Expert Mental Health Consultant at the University of Maryland, providing region-wide training and technical assistance to Head Start programs.<br /><br /></div>(Optional) readings for the seminar are available on the public Narrative Genetics Google Site,<a href="http://sites.google.com/site/narrativegenetics/Home" target="_blank" style="color: rgb(237, 28, 36); ">http://sites.google.com/<wbr>site/narrativegenetics/Home</a><br /><span class="Apple-style-span" style="color:#500050;"><span class="Apple-style-span" style="color:#000000;"><br /></span></span></span><div style="color: rgb(80, 0, 80); "><span style="font-size:100%;"><span style=" ;font-size:13px;"><br /></span></span></div><div style="color: rgb(80, 0, 80); "><span><span class="Apple-style-span" style="font-size:small;">The Narrative Genetics seminar at Columbia is sponsored by ISERP </span><a href="http://iserp.columbia.edu/workshops/genetics" target="_blank" style="color: rgb(237, 28, 36); "><span class="Apple-style-span" style="font-size:small;">http://iserp.columbia.</span><span class="Apple-style-span" style="font-size:small;"><wbr>edu/workshops/genetics</span></a><span class="Apple-style-span" style="font-size:small;">. The seminar is open to faculty, students, and others in the Columbia University community and in the New York metropolitan area. Presenters discuss work in progress and welcome participation in the discussion.</span></span></div></span>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-80156664103941534122010-01-15T06:14:00.000-08:002010-01-15T06:23:07.905-08:00CALL FOR PAPERS<span class="Apple-style-span" style=" border-collapse: collapse; font-family:arial, sans-serif;font-size:13px;"><p style="margin-left: 0.5in; "><b>Modern Language Association</b> annual meeting Los Angeles, 6-9 January 2011 Literature and Science Division</p><p style="margin-left: 0.5in; "> </p><p style="margin-left: 0.5in; ">REPRODUCTIONS: EUGENICS AND GENETICS</p><p style="margin-left: 0.5in; "> </p><p style="margin-left: 0.5in; ">Literary engagements with eugenic and genetic theories and practices. How do literary texts reproduce or rewrite scientific discourses of disability, deafness, immigration and ethnicity, disease, breeding? 250-word abstracts to <a href="mailto:gardenr@upstate.edu" target="_blank" style="color: rgb(237, 28, 36); ">gardenr@upstate.edu</a> by 5 Mar. 2010. </p></span>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-77155963750195671242009-05-28T14:09:00.000-07:002009-05-28T14:44:26.545-07:00Disability, Diversity, and the Elimination of Human KindsThis excerpt was passed along to me by Felice Aull, who maintains NYU's <a href="http://medhum.med.nyu.edu/blog/">Literature, Arts & Medicine Blog</a>. The full article can be found on our<a href="http://sites.google.com/site/narrativegenetics/"> document site</a>.<br /><br />Woodcock, S. (2009, April). Disability, Diversity, and the Elimination of Human Kinds.<br />Social Theory and Practice, 35(2), 251-278.<br /><br />Excerpt:<br /><br />"In a discussion of medical technology and its impact on persons with disabilities, Connie Panzarino notes that she is frequently asked to provide a blood sample to help researchers identify the gene for a rare condition she was born with known as Werdnig-Hoffmann Disease. Recognizing that this information will be used to prevent persons who carry the gene from being born, Panzarino is mystified and angered by these requests. She offers an illuminating explanation for her refusal to cooperate with the research: "I cannot in all conscience contribute to the elimination of people like myself." Panzarino's reasons for opposing the elimination of disability were complex and varied, but one can extract from her statement a recognizable objection from many in the disabled community: the claim that there is something wrong with research and medical technology designed to prevent certain kinds of humans from existing. Members of the Deaf community have expressed the objection when arguing against the widespread use of cochlear implants, and persons with spina-bifida, achondroplasia, and other genetic conditions have similarly objected to me goal of preventing persons with disabilities from being born. Panzarino's claim is especially striking, however, because the condition she inherited is associated with very serious disabilities and what many consider to be a diminished quality of life. Werdnig- Hoffmann Disease is a type of Spinal Muscular Atrophy characterized by weakness of voluntary muscles, swallowing difficulties and impaired breathing. It has a mortality rate greater than sixty percent by age two, and mis mortality rate rises to nearly eighty percent by age five.4 It is a disease that, along with Huntington's Disease, Tay-Sachs, and LeschNyhan Syndrome, most people believe we have a straightforward moral obligation to eradicate. Panzarino, however, lived to the age of fifty-four. She was an accomplished therapist, artist, and author who lived a rich and productive life. Why, men, is it morally required, or even permissible, to try to prevent persons like her from existing?<br /><br />In this paper I discuss a certain way of advancing the claim that it is morally wrong to seek the elimination of certain human kinds by preventing representative persons of these kinds from existing. I then argue that a qualified interpretation of this claim ought to be taken seriously. Some interpretations of the preceding claim are, of course, false. For example, the claim mat it is never permissible to eliminate any human kind is a nonstarter. The successful eradication of Huntington's Disease would presumably be a good thing, though research aimed at doing so would consist in seeking to prevent a particular human kind from existing. Hence, it is not necessarily pernicious to seek the elimination of at least some human kinds, though we begin to tread on delicate ethical territory when we explicitly adopt this as our objective when developing new medical technology."<br /><br /><div id=":1gd" class="ii gt"><wbr>____________<br />Rachael A. Zubal-Ruggieri<br />Information Coordinator, Center on Human Policy, Law, and Disability Studies<br />Coordinator of Computer & Technical Applications, Early Childhood Direction Center<br />Editorial Staff, Intellectual and Developmental Disabilities (IDD)<br />Syracuse University<br /></div>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-76933837061030695552009-05-14T14:46:00.000-07:002009-05-15T12:45:13.279-07:00Brush up on your Narrative Genetics from the Couch<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCMlo01YNiGgzhrq_pUZyCsM3tttOtY8sUK9zhMSXpbOk9gldZliVv5Tkf8Is03B5gBT8r-pFxd0fj43GjTUV2ttjjST_a4HfJmeTsER60ZK1ApM2VwFfbsgtWK4PlWIphdLNvlvXwRlo/s1600-h/X-Men+Theme+3.jpg"><img style="cursor: pointer; width: 142px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCMlo01YNiGgzhrq_pUZyCsM3tttOtY8sUK9zhMSXpbOk9gldZliVv5Tkf8Is03B5gBT8r-pFxd0fj43GjTUV2ttjjST_a4HfJmeTsER60ZK1ApM2VwFfbsgtWK4PlWIphdLNvlvXwRlo/s200/X-Men+Theme+3.jpg" alt="" id="BLOGGER_PHOTO_ID_5336134310015908866" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEily50ObVNXujZFlsSfXNbLaDoaPOhEQqzuBT5VRlqERHrQzB18MljqiWImbFKzDPtctX3UX9VVxuqbxeiJyNaiDXXIIYIjje3aEQtRSf56rxgXoT4nmZOD1xWBoXJ4PtSXNUx3a3rp06U/s1600-h/star-trek.jpg"><img style="cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEily50ObVNXujZFlsSfXNbLaDoaPOhEQqzuBT5VRlqERHrQzB18MljqiWImbFKzDPtctX3UX9VVxuqbxeiJyNaiDXXIIYIjje3aEQtRSf56rxgXoT4nmZOD1xWBoXJ4PtSXNUx3a3rp06U/s200/star-trek.jpg" alt="" id="BLOGGER_PHOTO_ID_5336134493582383586" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEily50ObVNXujZFlsSfXNbLaDoaPOhEQqzuBT5VRlqERHrQzB18MljqiWImbFKzDPtctX3UX9VVxuqbxeiJyNaiDXXIIYIjje3aEQtRSf56rxgXoT4nmZOD1xWBoXJ4PtSXNUx3a3rp06U/s1600-h/star-trek.jpg"></a><div>Pop culture's imagination of genetic mutations have brought us the X-Men, Aeon Flux, Star Trek, and many more.<br /><br />Here's some books and movies with genetic themes that got us talking, with various degrees of adoration and criticism, during Patricia Wald's visit.<br /><br />What are you watching? What should we be reading? Feel free to comment on this blog.<br /><br />Movies:<br />X Men (and X Men II)<br />Aeon Flux<br />Boys From Brazil<br />Island<br />Teenage Mutant Ninja Turtles<br />Star Trek<br />Invasion of the Body Snatchers<br />Journey of a Man (Documentary)<br />AI (Artificial Intelligence)<br />Frankenstein<br />Multiplicity<br />Minority Report<br />28 Days Later, Weeks, Months etc.<br />Godsend<br />Twilight of the Golds<br />Sound and Fury (Documentary)<br />Repro Films: Species, Aliens, Hand Maid's Tale<br /><br />Books:<br />Never Let Me Go<br />Lilith's Brood<br />Left Hand of Darkness<br />The Lovers<br />The Century After Beatrice</div>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-83489971543677279582009-05-11T09:40:00.000-07:002009-05-15T12:06:54.899-07:00Let's not panic over the pandemic-lets just focus on global poverty<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiym1o22-0jtKUdmT1rBFuzXjTrVEp4sNZYrKKcD90QsUhJyEXL7uCMpwtOzTyHIf3CmDq52xDfZl747d-0RM40ahRjm5GqLSFEycv6vbdqIA-px2PSAw_PNoFEy405Lp6L6fyowGvzvek/s1600-h/wald_priscilla_2_300.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 148px; height: 192px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiym1o22-0jtKUdmT1rBFuzXjTrVEp4sNZYrKKcD90QsUhJyEXL7uCMpwtOzTyHIf3CmDq52xDfZl747d-0RM40ahRjm5GqLSFEycv6vbdqIA-px2PSAw_PNoFEy405Lp6L6fyowGvzvek/s200/wald_priscilla_2_300.jpg" alt="" id="BLOGGER_PHOTO_ID_5336128670816484850" border="0" /></a>". . .we should not lose focus on the fact that nothing will go further to contain the spread of disease than a healthy population with access to health care."<br />- Priscilla Wald<br /><br />Priscilla Wald visited both the Narrative Medicine Rounds and the Narrative Genetics seminar last week. As a poet, I was inspired by her deft understanding of the work metaphors do in influencing global policy, and have found myself referencing her work in conversations with friends outside the literature and medicine community.<br />Read the full article here:<br /><a href="http://www.theglobeandmail.com/servlet/story/RTGAM.20090430.wcopandemic01/BNStory/specialComment/home">Let's not panic over the pandemic-lets just focus on global poverty</a>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-24561224364655177092009-04-29T10:43:00.000-07:002009-04-29T11:35:42.879-07:00Risk of Autism Tied to Genes that Influence Brain Cell Connections<span style="color: rgb(0, 0, 0);font-family:georgia;font-size:100%;" ><div>I am passing along this email from Maggie Hoffman.<br /><br />Marsha made some interesting points, which many of us have been speaking about for years:<br /><br /></div> <div> </div> <div>Now we have three studies reporting that both common and rare genes have been identified as putting people at risk for autism spectrum disorders. The genes contribute to both forming and maintaining brain cell connections. Additionally, the reports state that genetic and environmental factors come into play in creating this risk.<br /><br /></div> <div> </div> <div>This was not a day that the earth stood still. Haven't 'we' always thought ASDs had both genetic and environmental causes? If there were prenatal tests for autism spectrum disorder risk, would expectant mothers be offered probability statistics, or a referral for termination?<br /><br /></div> <div> </div> <div>Marsha commented that soon there will be no unborn child perfect enough to be born.<br /><br /></div> <div> </div> <div>In preschool faculty meetings and in school bus stop gatherings folks casually comment, "Well his dad is kind of socially challenged" or "His mom isn't good with facial recognition", or even, charitably, "That little guy has quite the memory, just like his older brother". Have we really learned anything more from the research, and more importantly, what can we do with it?</div> <div> </div> <div><br /><a href="http://www.ninds.nih.gov/news_and_events/press_releases/pressrelease_autism_cell_adhesion_genes.htm" target="_blank">Click here: Risk of Autism Tied to Genes that Influence Brain Cell Connections: National Institute of Neurological Disorders and Stroke</a> </div></span><div style="font-family:georgia;"><span style="font-size:100%;"><br /></span></div>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-74717499872301693072009-04-25T19:25:00.000-07:002009-05-02T23:39:32.365-07:00Next & Last Seminar of the Season, May 7th<p><b>Narrative Genetics Seminar on May 7.</b> Usual time and place: Rm 801 International Affairs Building, 118<sup>th</sup> St. & Amsterdam Ave.. 5:30-7:30pm. </p> <p> </p> <p><b>Clones, Chimeras, and Other Creatures of the<br />Biotechnological Revolution: Toward a Genomic Creation Myth</b></p><p><b>Priscilla Wald</b> from Duke University will be our guest. You can read her article on our Google Site <a href="http://sites.google.com/site/narrativegenetics/Home" target="_blank">http://sites.google.com/site/<wbr>narrativegenetics/Home</a> or on the ISERP Narrative Genetics Seminar site <a href="http://www.iserp.columbia.edu/workshops/genetics" target="_blank">www.iserp.columbia.edu/<wbr>workshops/genetics</a>.</p> <p> </p> <p>May 7 will be our last seminar for this season. We will have a new series of seminars during the academic year 2009-2010. Please help us think about topics and guests for the seminars next year. Email them to me at marsha <i>at</i> marshahurst <i>dot </i>com or post them to the Google site.</p>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-4508635461984239222009-04-10T13:01:00.000-07:002009-04-13T12:49:34.664-07:00Audio of Interest on Story Corps<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOllx-gw5_RSf8O4TqCF1IehwDMRrZ4u6xUyw3jO8XWFPtyRY2Rja1cS8l4NxNUF4HSRo-jnex7g9LUC2iG1jF0cFbGnKmYbaH-RR3wXHFvDBVF_xoEJRjmUAAieDGpBxm8fOk9jYoUuY/s1600-h/chromosomes.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 200px; height: 98px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOllx-gw5_RSf8O4TqCF1IehwDMRrZ4u6xUyw3jO8XWFPtyRY2Rja1cS8l4NxNUF4HSRo-jnex7g9LUC2iG1jF0cFbGnKmYbaH-RR3wXHFvDBVF_xoEJRjmUAAieDGpBxm8fOk9jYoUuY/s200/chromosomes.jpg" alt="" id="BLOGGER_PHOTO_ID_5324265510859202930" border="0" /></a><br />I've been surfing around Story Corps and found some audio clips by and about people living with genetic illness. Some of us have shared these stories with students and colleagues in Narrative Medicine classes and workshops. Listen carefully:<br /><br /><br />12-year-old Joshua Littman, who has Asperger's syndrome, interviews his mother, Sarah and asks her such things as “Have you ever lied to me?” and "Did I live up to your expectations?"<br /><a href="http://www.storycorps.net/listen/stories/sarah-and-joshua-littman" target="_blank">http://www.storycorps.net/<wbr>listen/stories/sarah-and-<wbr>joshua-littman</a><br /><br /><br />Thom and Karen Horsey remember their daughter, Liddy, who had Cornelia de Lange Syndrome. Liddy died from an illness unrelated to CdLS.<br />“Liddy did things on her own schedule...”<br /><a href="http://www.storycorps.net/listen/stories/karen-and-thom-horsey" target="_blank">http://www.storycorps.net/<wbr>listen/stories/karen-and-thom-<wbr>horsey</a><br /><br /><br />“How did you feel when I was born?”<br />15-year-old Mary Warm, who has Down syndrome, to her father, David.<br /><a href="http://www.storycorps.net/listen/stories/mary-and-david-warm" target="_blank">http://www.storycorps.net/<wbr>listen/stories/mary-and-david-<wbr>warm</a><br /><br /><br />Barbara Cooper (L) tells her mother, Jody Houston (R), about living with a form of the rare genetic condition, Progeria.<br />“It's a premature aging disorder...” "I did everything I ever wanted to do."Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-84826931512086439012009-04-04T07:52:00.000-07:002009-04-13T11:34:46.866-07:00Cybergenetics? The internet and genetic community<div>How does the internet facilitate the telling and receiving of genetic stories? What is the role of cyberspace in shaping the ‘geneticisation’ of our lives? What work does the internet do in creating communities around genetic conditions?</div><br /><div><br />These were some of the questions with which the <a href="http://iserp.columbia.edu/workshops/genetics">ISERP Narrative Genetics seminar</a> grappled during a recent presentation by <a href="http://www.csw.ucla.edu/research_scholars.html">Alice Wexler</a> on the narratives of Huntington’s Disease. Wexler’s historical research on what was then called “St. Vitus’ dance” or “magrums” focused on Huntington’s small town origins in East Hampton, NY where many prominent families were affected by the disease. She also discussed a particular, isolated community in Venezuela that is a modern day cluster for Huntington’s Disease-affected families.<br /></div><br /><div>Which is when the conversation turned to the internet, a medium which has in many ways redefined the meaning of the word community. For individuals with disabilities, or sufferers of illness, the internet provides potential connection with distant friends and family, with others experiencing similar conditions, with medical research and medical professionals that may not have been otherwise accessible. In many ways, the internet is the antidote for the isolation that so often accompanies disability or illness. From simple email, to social networking portals, to gaming sites like second life, cybernetic communities enable those experiencing illness or disability to connect, give voice, share research, advocate, and organize. It enables someone who might not have physical mobility to essentially travel the globe, or even embody a cyber-self, an ‘avatar’, with an entirely different set of embodied identities and abilities. Admittedly, these possibilities are not without potential complications. As <a href="http://bioethics.northwestern.edu/faculty/chambers.html">Tod Chambers</a> has written in his essay "Virtual Disability: On the Internet, Nobody Knows You're Not a Sick Puppy" (which appears in Lester Friedman's collection <a href="http://www.amazon.com/Cultural-Sutures-Medicine-Lester-Friedman/dp/0822332949">Cultural Sutures</a>: Medicine and Media), cyberspace challenges the authenticity of the suffering voice; this is a place where one can wear a mask of disability or illness, draw other sufferers close, and create communities which are vexed by troubling issues of 'the authentic' and 'the real.' </div><br /><div><br />These issues notwithstanding, for genetic conditions, the internet appears to function in particularly powerful ways. (Consider the existence of this very blog!) For instance, those experiencing a particularly rare genetic condition, who might have never met another patient with the same illness due to issues of distance, now have the potential to not only connect to others but organize communities, discussion groups, and advocacy organizations. For those with autism-like, immunosuppressed, or heavily infectious conditions, the internet provides connection without physical togetherness. Consider the crucial role the internet has played for young people with cystic fibrosis. As Kayla Rachlin Small has both presented to the seminar and written in the <a href="http://www.nytimes.com/2008/03/16/fashion/16love.html?_r=1&ref=fashion&oref=slogin">New York Times </a>, individuals with cystic fibrosis are often discouraged – even forbidden – from being physically together due to the infectious risk CF sufferers pose to one other – where a rare bacteria that is harmless to the general population might in fact become life threatening if passed on to another CF patient. Here, the internet is a powerful medium for the CF community – allowing individuals access to one another in ways otherwise impossible. The internet not only unites people otherwise separated by space, but by time. Whether around the world in a different time zone, or suffering a rare sleep disorder such as <a href="http://www.ninds.nih.gov/disorders/kleine_levin/kleine_levin.htm">Klein-Levin syndrome</a>, where an individual may sleep up to 20 hours a day for weeks or even months, the internet permits connections that are, in a sense, beyond the constraints of simultaneity. (The parallel, of course, between genetic and digital "codes" cannot be lost upon us, perhaps a topic for another blog).<br /></div><br /><div>Clearly, there are limits to cybernetic communities. There is a difference between a cybernetic hug and a real one, a emoticon and a tangible, embodied emotion. However, it is impossible not to recognize the critical importance of the internet in narrative genetics. The stories we tell – and are able to hear – about genetic conditions would be quite different if not for the medium of cyberspace. The postmodern communities that we form are different, yes, than the Huntington’s cluster of East Hampton, NY, yet they are a critical part of how we understand, experience and organize around genetic conditions today. </div>Sayantanihttp://www.blogger.com/profile/11408914738803274489noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-76421812106313765572009-03-30T13:17:00.000-07:002009-04-13T11:35:12.507-07:00The next NG Seminar is ThursdayNARRATIVE GENETICS SEMINAR<br />APRIL 2, 6-8PM<br />Room 801 International Affairs Building<br />420 West 118 St, 8th Floor, Columbia<br />This event is free and open to the public<br /><br />Our guest will be Alice Wexler from UCLA, who will talk about genetic disease narratives, using her work on Huntington’s Disease as a case study.<br /><br />Suggested readings include Alice’s first book, Mapping Fate and an article by Alice, “Chorea and Community in a Nineteenth-Century Town,” that is an early version of part of her second book, The Woman Who Walked into the Sea. This article and other recommended readings, including Nancy Wexler’s article, “Genetic ‘Russian Roulette’: The Experience of being ‘At Risk’ for Huntington’s Disease,” are accessible on the Narrative Genetics Google site (open to the public): http://sites.google.com/site/narrativegenetics/Home<br />Fore more information: <a href="http://iserp.columbia.edu/workshops/genetics" target="_blank">http://iserp.columbia.edu/<wbr>workshops/genetics</a>Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-53359317863609578192009-03-30T13:02:00.000-07:002009-04-13T12:57:36.422-07:00Sprout Film Fest at MET<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcbfbTrQ1ngCbxabtJLEGQEiFrWBM2IuuxEDlRcDuko2tS3f72yg4xgoM9RdPg3CbChyphenhyphenr4f2OPVMsvdEcwI-8sn0LF4HQ0r8ANB5ucPBcMOE67OagKcDDgwIFUGsVJpuVXlasvIcMdCHc/s1600-h/sprout.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 136px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcbfbTrQ1ngCbxabtJLEGQEiFrWBM2IuuxEDlRcDuko2tS3f72yg4xgoM9RdPg3CbChyphenhyphenr4f2OPVMsvdEcwI-8sn0LF4HQ0r8ANB5ucPBcMOE67OagKcDDgwIFUGsVJpuVXlasvIcMdCHc/s400/sprout.jpg" alt="" id="BLOGGER_PHOTO_ID_5324267121986562274" border="0" /></a><br />I am passing along this email from Ellen Greenebaum:<br /><br />Dear Samantha,<br />I think that you might be interested in knowing about and alerting your faculty, staff, students, and patients to a wonderful film festival by and about people with developmental disabilities and autism: Sprout Film Festival.<br /><br />The Film Festival's website is http://www.gosprout.org/film/sff2009/index.html<br /><br />It takes place at the Metropolitan Museum of Art and begins Friday May 1, 2 - 9PM, goes on through Saturday 11:30AM - 9 PM, and finishes Sunday May 3, 12 - 4PM. -During intermissions I wander the museum exhibits and enjoy the snacks provided by Sprout.<br /><br />I have attended the festival nearly every year for the last 6 years and in my opinion, the films are superb; almost all are new each year, and they come from all over the world.<br /><br />Often, film makers, actors, subjects of the films, and their families attend and hold a Q&A.<br /><br />Some ARC agencies bring groups of developmentally disabled individuals. Many educators and clinicians attend too. But most folks come just out of general interest and curiosity.<br /><br />Sprout is an organization that sponsors recreational activities locally (893 Amsterdam@104th St. NYC) and also offers trips to all sorts of exciting (or relaxing) places.<br /><br />My brother Michael is 52 year old and has gone on many trips with Sprout over the years, most recently a cruise to Bermuda.<br />Full disclosure: My brother is my only connection to Sprout, aside from being in awe of the director Anthony DiSalvo who founded Sprout from scratch 30 years ago.<br /><br />Sprout's website is http://gosprout.org/<br /><br />The Film Festival's website is http://www.gosprout.org/film/sff2009/index.html<br /><br />There will be a discount for students, seniors, & disabled (and faculty and staff of course- though it doesn't say so).<br /><br />Thanks, Ellen Greenebaum BA (Barnard) MD (P&S) MPH (Mailman School of Public Health)Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0tag:blogger.com,1999:blog-7782612818463090658.post-53294668042242654952009-03-11T10:21:00.001-07:002009-04-16T13:58:07.396-07:00Books We Recommend<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzH-g_B2VXwdzLSyM8723rR6k5eU1vNpNkzhAyGS7djbpnvA-i7ovIT7xAA3uTx25jtMMUcgaQnfjr3WPSgR3NGhgZKc9oenw9xiagKtBIRkYcAsPg5pFi-8Hj-W-dy7Ly34bzk_D3ri0/s1600-h/organs.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 200px; height: 146px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzH-g_B2VXwdzLSyM8723rR6k5eU1vNpNkzhAyGS7djbpnvA-i7ovIT7xAA3uTx25jtMMUcgaQnfjr3WPSgR3NGhgZKc9oenw9xiagKtBIRkYcAsPg5pFi-8Hj-W-dy7Ly34bzk_D3ri0/s200/organs.jpg" alt="" id="BLOGGER_PHOTO_ID_5325057280970542354" border="0" /></a><br />Lori B. Andrews Future Perfect: Confronting Decisions about Genetics. New York, Columbia, 2001.<br /><br />Lennard J. Davis (ed). The Disability Studies Reader (Second Edition). New York: Taylor and Francis, 2006.<br /><br />Jurgen Habermas. The Future of Human Nature. Molton, MA, Polity Press, 2003.<br /><br />Donna J. Haraway. Simians, Cyborgs and Women: The Reinvention of Nature. New York: Routledge, 1991.<br /><br />Robin Marantz Henig, Pandora's Baby. New York: Houghton Mifflin, 2004.<br /><br />Bill McKibben. Enough: Staying Human in an Engineered Age. New York: Owl Books, 2003.<br /><br />Eric Parens and Adrienne Asch (eds.) Prenatal Testing and Disability Rights. Washington DC: Georgetown University Press, 2007.<br /><br />Penny Wolfson, Moonrise, St. Martin's Press, 2003.<br /><br />Genetics, Disability, and Deafness, John Vickrey Van Cleve, Editor, Gallaudet University Press 2004Samantha Barrowhttp://www.blogger.com/profile/11086691559318275913noreply@blogger.com0