Hot Topics: Genetics

Blog Posts (30)

January 28, 2015

Still Alice: A Portrait of Familial Alzheimer’s Disease

by Craig M. Klugman, Ph.D.

This past weekend I spent a cold, snowy day in the theater watching the movie Still Alice.…

November 21, 2014

Bioethics Exam

In keeping with the evaluation-obsessed spirit of the time, here is a little bioethics test. No multiple-choice fill-in-the-bubbles here, no simple true/false; but bioethics usually isn’t so simple, is it? So it’s OK if you don’t have a No. 2 pencil, you can still take today’s exam! _______________________ 1. The patient-physician relationship depends on trust, and close observation, and appreciating subtleties, and giving one’s full attention... // Read More »
October 3, 2014

Prenatal Genetic Testing, and Down Syndrome

Lots of people don’t understand prenatal genetic testing, including both patients and doctors. For instance, many people think that the BUN genetic ultrasound or the “Quad screen” or the prenatal AFP tests can tell whether or not a baby has a genetic anomaly (they can’t; they can only indicate whether a fetus has an increased risk for a genetic anomaly), or that the tests are... // Read More »
September 18, 2014

Genetic Testing For All: Is It Eugenics?

<p style="line-height: 19.0400009155273px;">In recent weeks, there’s been talk of three types of genetic testing transitioning from targeted populations to the general public: carrier screens for recessive diseases, tests for BRCA mutations, and non-invasive prenatal testing (NIPT) to spot extra chromosomes in fetuses from DNA in the maternal bloodstream.</p> <p style="line-height: 19.0400009155273px;"><span style="line-height: 19.0400009155273px;">Are these efforts the leading edge of a new eugenics movement? It might appear that way, but I think not.</span></p> <p style="line-height: 19.0400009155273px;"><span style="line-height: 19.0400009155273px;">When I began providing genetic counseling 30 years ago at CareNet, a large ob/gyn practice in Schenectady, NY, few patients were candidates for testing: pregnant women of “advanced maternal age” (35+), someone with a family history of a single-gene disorder or whose ethnic background was associated with higher prevalence of a specific inherited disease. Their risks justified the cost and potential dangers of the tests.</span></p> <p style="line-height: 19.0400009155273px;"><span style="line-height: 19.0400009155273px;"><strong style="line-height: 19.0400009155273px;">The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our <a href="/Academic/bioethics/index.cfm">website</a>.</strong></span></p>
September 11, 2014

Who’s Afraid of GMO?

<p style="line-height: 19.0400009155273px;"><span style="line-height: 19.0400009155273px;">The answer, it seems, is quite a number of people. The question that we really need to address is why. Are these concerns rational, are they science based, should they provide the basis for public policy? People have been using selective breeding and hybridization techniques for thousands of years to alter the genetic makeup of both plant and animal agricultural products. <a href="https://www.youtube.com/watch?v=1ecT2CaL7NA">Neil Tyson Degrasse</a> </span><span style="line-height: 19.0400009155273px;">made the point very clearly and effectively that almost nothing we grow agriculturally has been unchanged from the plants and animals living naturally. They have all been altered by the intentional action of human beings. Selective breeding, of course, has significant differences from what is currently characterized by the term genetic modification which is done using the techniques of molecular biology to insert genetic material. But they do establish the principle that most people are happy to eat food products which have been genetically altered by people. That sweet red apple you had for lunch or the fattened cattle which produced your juicy hamburger do not exist in nature.</span></p> <p class="MsoNormal" style="line-height: 19.0400009155273px;"><span style="line-height: 19.0400009155273px;">The techniques of genetic engineering which can be used to insert genetic material into the genome of a cell permitted the alteration of crops that resist pests requiring less use of pesticides. They allow selective herbicide resistance allowing the use of minimally toxic or nontoxic  herbicides as well as no till farming which diminishes erosion and reduces use of fossil fuels. They have also been able to use these techniques to add essential nutrients to address widespread dietary deficiencies. An example of this is the development of golden rice, the </span><a style="line-height: 19.0400009155273px;" href="http://en.wikipedia.org/wiki/Golden_rice">genetic modification of rice</a><span style="line-height: 19.0400009155273px;"> to produce vitamin A. These are good things.</span></p> <p class="MsoNormal" style="line-height: 19.0400009155273px;"><strong style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 20px;">The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our <a style="text-decoration: underline; color: #000099;" href="/Academic/bioethics/index.cfm">website</a>.</strong><span style="line-height: 19.0400009155273px;"> </span></p>
August 27, 2014

Update: How Ebola Kills

<p>Eman’s emails arrive hours ahead of the news here. He wrote on Sunday, August 17:</p> <p><em>“An Ebola quarantine site was attacked and looted. News is that most of the patients have escaped. This is going to put more fear into the population. All this because people are denying the virus.  More people might get exposed.  I’m so weak I can’t wake up this morning. Its 6:00 pm and I am still in bed listening to the news.  All this happened in a very populated area called West Point. Got pain all over my body. Keep me in your meditations.”</em></p> <p>Emmanuel is a medical student in <a href="http://blogs.plos.org/dnascience/2013/04/25/dna-day-and-world-malaria-day-the-sickle-cellmalaria-link-revisited/">Liberia</a> whom my husband and I have been supporting since he contacted me after reading my human genetics textbook in 2007. Until the fever hit him last weekend, he dedicated himself to “sensitization,” educating the public about how to stay safe. But now he’s too sick and weak to venture out.</p> <p>His email from Monday, August 18, said only <em>“Need help!”</em></p> <p style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 20px;">Ricki Lewis is the author of "<a style="text-decoration: underline; color: #000099;" href="http://www.amazon.com/The-Forever-Fix-Therapy-Saved/dp/0312681909">The Forever Fix: Gene Therapy and the Boy Who Saved It</a>," St. Martin's Press, March 2012.  To read more blogs from the author, please visit her site at <a style="text-decoration: underline; color: #000099;" href="http://www.rickilewis.com/">http://www.rickilewis.com</a>.</p> <p style="border: 0px; margin: 0px 0px 10px; padding: 0px; vertical-align: baseline; color: #333333; font-family: Georgia, 'Bitstream Charter', serif; font-size: 14px; line-height: 20.296875px;"><strong style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 20px;">The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our <a style="text-decoration: underline; color: #000099;" href="http://www.amc.edu/Academic/bioethics/index.cfm">website</a>.</strong></p>
June 14, 2014

Making Babies; the New “Normal”

Once upon a time in a fairy tale land that now seems far, far away, young people fell in love, got married, and started a family. But the idea of “starting a family” has taken on new meaning as pregnancy has come under the rubric of technological control. Increasingly, it is not about having children but about “making babies.” With the advent of technology and... // Read More »
June 12, 2014

Germline Alteration and Defining “Just Research”

Yesterday’s post by Steve Phillips raises a central question for us in the “biotech century”:  are there some sorts of experiments that fundamentally ought not be done because of the potential they will be grossly misapplied by bad actors?  Steve cited research by Lord Robert Winston seeking to create genetically altered pigs—that seem, from the description in the press, to be what scientists call “transgenic”... // Read More »
June 11, 2014

New method for genetic modification – genetic alteration of sperm

Germline genetic modification is a technique that some find intriguing and many find very concerning when its use is considered in humans. However there are uses of germline genetic modifications in animals that may impact humans in multiple ways. In an article in The Telegraph, British researcher Robert Winston talks about current research to develop animal organs (usually from pigs) that could be genetically modified... // Read More »
May 8, 2014

“Faking” Life?

Synthetic biology—loosely defined as the intersection of engineering and biology—is a burgeoning field with the potential to create or alter “non-naturally” occurring organisms using basic biomolecules, or similar molecules not found in living things as we encounter them.  A few years ago, Dr. Craig Venter’s group in San Diego synthesized the entire DNA of one species of mycobacterium on a lab bench, added some identifier... // Read More »

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Published Articles (40)

American Journal of Bioethics: Volume 14 Issue 11 - Nov 2014

Protecting Posted Genes: Social Networking and the Limits of GINA Sandra Soo-Jin Lee & Emily Borgelt

American Journal of Bioethics: Volume 14 Issue 3 - Mar 2014

Addressing the Ethical Challenges in Genetic Testing and Sequencing of Children Ellen Wright Clayton, Laurence B. McCullough, Leslie G. Biesecker, Steven Joffe, Lainie Friedman Ross, Susan M. Wolf & For the Clinical Sequencing Exploratory Research (CSER) Consortium Pediatrics Working Group

American Journal of Bioethics: Volume 14 Issue 3 - Mar 2014

Ethics and Empiricism in the Formation of Professional Guidelines Mildred K. Cho

American Journal of Bioethics: Volume 13 Issue 10 - Oct 2013

Gender Eugenics? The Ethics of PGD for Intersex Conditions Robert Sparrow

American Journal of Bioethics: Volume 13 Issue 10 - Oct 2013

Critically Appraising Prenatal Genetic Diagnosis to Prevent Disorders of Sexual Development: An Opportunity Missed Laurence B. McCullough

American Journal of Bioethics: Volume 13 Issue 5 - May 2013

The Right to Know Your Genetic Parents: From Open-Identity Gamete Donation to Routine Paternity Testing An Ravelingien & Guido Pennings

American Journal of Bioethics: Volume 13 Issue 2 - Feb 2013

Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings? Catherine Gliwa & Benjamin E. Berkman

American Journal of Bioethics: Volume 13 Issue 2 - Feb 2013

What To Do With the Could-Be-Knowns of Genomic Medicine Richard R. Sharp

American Journal of Bioethics: Volume 12 Issue 10 - Oct 2012

Review of Marion Danis, Emily Largent, David Wendler, Sara Chandros Hull, Seema Shah, Joseph Millum, Benjamin Berkman, and Christine Grady, Research Ethics Consultation: A Casebook Emily E. Anderson

American Journal of Bioethics: Volume 12 Issue 4 - Apr 2012

Swabbing Students: Should Universities Be Allowed to Facilitate Educational DNA Testing? Shawneequa L. Callier

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News (796)

January 29, 2015 2:55 pm

Obama to Request Research Funding for Treatments Tailored to Patients’ DNA

President Obama will seek hundreds of millions of dollars for a new initiative to develop medical treatments tailored to genetic and other characteristics of individual patients, administration officials say.

January 29, 2015 2:54 pm

Genetic Testing and Tribal Identity

The genetic sequencing company 23andMe recently tapped into its vast bank of data to release a study on genetic origins, producing the biggest genetic profile of the United States ever conducted—big, but nowhere near complete.

January 26, 2015 6:52 pm

Testing for mortality: Why I measured my telomeres. Should you?

This piece discusses telomere testing as a way to predict age-related diseases. Hank Greely, with the Stanford Center for Biomedical Ethics and director of Stanford’s Center for Law and the Biosciences, comments on the growing concern among federal regulators.

January 23, 2015 5:43 pm

Surprise! With $60 Million Genentech Deal, 23andMe Has A Business Plan

A deal being announced today with Genentech points the way for 23andMe, the personal genetics company backed by Facebook billionaire Yuri Milner and Google Ventures to become a sustainable business – even if the company’s discussions with the U.S. Food and Drug Administration stretch on for years.

January 23, 2015 5:42 pm

Most parents want their babies’ genome sequenced, study finds

By sequencing the billions of chemical letters in a cell’s DNA, which make up the human genome, scientists may be able to better estimate the risk of a person developing cancer, heart, biochemical and metabolic diseases.

January 16, 2015 1:02 pm

Who Owns A Human Genome?

When a human subject is involved with a scientific study, researchers must obtain informed consent, right? Well, if the study in question involves genomics research, the answer isn’t so clear.

January 9, 2015 8:29 pm

Genetic Testing Company 23andMe Finds New Revenue With Big Pharma

The past two years have been a rough and transformative time for the controversial DIY genetic testing company 23andMe. At the end of 2013, the Food and Drug Administration requested that the company shut down its main service, an analysis of a person’s genome gleaned from spit samples that anyone who purchased a kit could send in, noting that interpreting human genes—understanding what changes in DNA mean, and how they contribute or don’t contribute to disease—is still too much of a black box.

January 6, 2015 7:58 pm

Surprise! With $60 Million Genentech Deal, 23andMe Has A Business Plan

A deal being announced today with Genentech points the way for 23andMe, the personal genetics company backed by Facebook billionaire Yuri Milner and Google Ventures to become a sustainable business – even if the company’s discussions with the U.S. Food and Drug Administration stretch on for years.

January 5, 2015 6:01 pm

Genetic Testing and FDA RegulationOverregulation Threatens the Emergence of Genomic

In November 2014, the US Food and Drug Administration (FDA) revealed its intent to regulate thousands of medical diagnostic tests being performed in as many as 11 000 clinical laboratories throughout the United States, focusing especially on genomic medicine.

December 10, 2014 6:02 pm

Pfizer bets on gene therapy as technology comes of age

Pfizer Inc is moving into the gene therapy space in the latest sign that the technology for fixing faulty genes may finally be ready for prime time, following earlier setbacks.

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