Subject: Biopolitical Views & News: Ethical Minefields - Surrogacy, Bio-data, Human Subjects Research
From: Center for Genetics and Society <[email-masked]>
To: "Subscriber " <[email-masked]>
Date: Fri, 8 Aug 2014 02:48:39 +0000

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August 7, 2014

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CGS To Chair Sessions at Forum on Cross-Border Surrogacy and Adoption ( http://www.geneticsandsociety.rsvp1.com/s169e7gPbUTl )

11 - 13 August, The Hague, Netherlands
Nearly one hundred scholars, activists, and policymakers from 27 countries will come together at the International Forum on Intercountry Adoption and Surrogacy August 11-14 to discuss ways to improve international standards.

Celebrating Troy Duster ( http://www.geneticsandsociety.rsvp1.com/s1a866gPbUTn )

Friday, August 15, Berkeley, California
You're invited to a day-long event featuring talks and reflections on Troy Duster's scholarly influence, contributions, and the significance of his work for current and future challenges. Register here. ( https://wufoo.rsvp1.com/s1a0e6gPbUTp )

Surrogate Mother Cares for Baby Abandoned Because of Down Syndrome ( http://www.geneticsandsociety.rsvp1.com/s163e7gPbUTt )

by Sonia Allan, Biopolitical Times guest contributor
Many see Baby Gammy&rsquo;s plight as highlighting the extent to which commercial surrogacy arrangements can exploit and commodify women and children.

More Heart-Wrenching Chapters in the Baby Gammy Story ( http://www.geneticsandsociety.rsvp1.com/s1a266gPbUTv )

by Jessica Cussins
Inadequate regulation of cross-border surrogacy has led to some truly awful stories, from coercion and exploitation of impoverished women, to children left stateless, to couples whose life savings have been embezzled by unscrupulous agencies. The unfolding story of Baby Gammy adds new dimensions to the complexities of contract pregnancies.

Data Yearning to Become Expensive Information ( http://www.geneticsandsociety.rsvp1.com/s166e7gPbUTx )

by Pete Shanks
Big players have big &ldquo;big data and genetics&rdquo; plans afoot. Here&rsquo;s the news from Genomics England, 23andMe, Google and Craig Venter.

North Carolina and Genetics: From Sterilization to Research Subjects  ( http://www.geneticsandsociety.rsvp1.com/s1a766gPbUTz )

by Victoria Massie, Biopolitical Times guest contributor
In the twentieth century, North Carolina was one of dozens of states that targeted certain citizens for eugenic sterilization. Today, in a town outside Charlotte, biotech researchers are asking for urine and blood samples and offering $10 gift cards to WalMart in exchange.

Tuskegee, Today ( http://www.geneticsandsociety.rsvp1.com/s17567gPbUTB )

by Jessica Cussins
Last week marked the 42nd anniversary of the Tuskegee syphilis study and many people took the opportunity to examine its relevance to the treatment of human research subjects today.

Huntington Man Deals with Mitochondrial Disease as Preventive Measures Debated ( http://www.geneticsandsociety.rsvp1.com/s177e7gPbUTD )
[Quotes CGS's Marcy Darnovsky]

by Kathleen Kerr, Newsday
Neither Tiller nor his mother are convinced that high-tech embryos are the best way to attack mitochondrial disease. She asked, "How do you know what might manifest in the long run?"

Lord Winston&rsquo;s Warning ( http://www.geneticsandsociety.rsvp1.com/s1b666gPbUTF )

by Gulzaar Barn, Practical Ethics
Winston discusses the history and misuse of gene science and eugenics, and points to the potential resurgence of this way of thinking.

Scientists Accuse Government of Dishonesty Over GM Babies in its Regulation of new IVF Technique  ( http://www.geneticsandsociety.rsvp1.com/s172e7gPbUTH )

by Steve Connor, The Independent
Leading scientists accuse the UK Government of misleading the public by redefining the term "genetic modification."

Thai Case Casts Spotlight on Business of Surrogacy ( http://www.geneticsandsociety.rsvp1.com/s1b366gPbUTJ )

by Grant Peck and Kriten Gelineau, AP
Contributing to Thailand's popularity as a surrogacy destination is the large number of impoverished women who will carry babies for a price, and the availability of doctors with good reproductive medical skills.

Australian Couple Leaves Down Syndrome Baby with Thai Surrogate  ( http://www.geneticsandsociety.rsvp1.com/s173a7gPbUTK )

by Lindsay Murdoch, The Sydney Morning Herald
Gammy, a six-month-old baby abandoned by his Australian parents, could die because his Thai surrogate mother cannot pay for medical treatment for his congenital heart condition.

China Experiences a Booming Underground Market in Surrogate Motherhood ( http://www.geneticsandsociety.rsvp1.com/s17127gPbUTM )

by Ian Johnson and Cao Li, The New York Times
In a small conference room overlooking Wuhan's smog-shrouded skyline, Huang Jinlai outlines his offer to China&rsquo;s childless elite: for $240,000, a baby with your DNA, gender of your choice, born by a coddled but captive rural woman.

A Surrogacy Agency That Delivered Heartache ( http://www.geneticsandsociety.rsvp1.com/s1b966gPbUTR )

by Tamar Lewin, The New York Times
As unregulated surrogacy agencies proliferate, the story of Planet Hospital stands as a cautionary tale about their ability to prey on vulnerable clients who do not notice the red flags.

No &lsquo;Rainbow Families&rsquo;: Ethnic Donor Stipulation at Fertility Centre &lsquo;Floors&rsquo; Local Woman ( http://www.geneticsandsociety.rsvp1.com/s17b27gPbUTU )

by Jessica Barrett, Calgary Herald [Canada]
A Calgary woman was shocked to learn of a policy at the city&rsquo;s only fertility treatment centre that restricts patients from using sperm, eggs or embryos from donors who do not match their ethnic background.

No Mandatory Standards for In Vitro Fertilization Clinics ( http://www.geneticsandsociety.rsvp1.com/s17e27gPbUTY )

by Gloria Galloway, The Globe and Mail
Would-be parents will find inconsistent oversight of fertility clinics across Canada, with some facilities free to set their own policies about how to do business.

Gender-Based Sex Selection Practice on the Rise ( http://www.geneticsandsociety.rsvp1.com/s1c0e6gPbUU0 )

Deccan Herald [India]
A recent United Nations study has pointed out the worsening trend in gender based sex selection practices &ndash; elimination of girl child during pregnancy &ndash; in the country.

Mining Your Genetic Data for Profit: The Dark Side of Biobanking ( http://www.geneticsandsociety.rsvp1.com/s1c1a6gPbUU3 )

by Amanda Wilson, Pacific Standard
One woman&rsquo;s story raises deep questions about the stark limits of current controls in the nascent biobanking industry.

The Government Owns Your DNA. What Are They Doing with it? ( http://www.geneticsandsociety.rsvp1.com/s1c266gPbUU6 )

by Susan Scutti, Newsweek
We may not be aware that many states have created biobanks funded by genetic material left over from our screening tests and our specimens may be used for purposes we do not fully understand.

Banks of Blood and Sperm ( http://www.geneticsandsociety.rsvp1.com/s13c27gPbUUa )

by Rebecca J. Rosen, The Atlantic
Banking on the Body investigates how the idea of a "bank" shapes the way we think about storing and distributing blood, sperm, and breast milk.

STAP Stem Cell Controversy Ends in Suicide for Japanese Scientist ( http://www.geneticsandsociety.rsvp1.com/s13fe7gPbUUd )

by Karen Kapla, Los Angeles Times
Sasai had said he was 'deeply ashamed' of the stem cell studies that were retracted in July.

Letter Campaign Sought to Pressure FDA Action on Stem Cell Clinics ( http://www.geneticsandsociety.rsvp1.com/s13ae7gPbUUh )

by Elie Dolgin, Nature Medicine
Unregulated stem cell clinics are proliferating throughout the US.

Stem Cell Treatment Warnings After Australian Woman Dies in Russia ( http://www.geneticsandsociety.rsvp1.com/s1fb66gPbUUj )

by Bridie Smith, Sydney Morning Herald
Risks of unproven stem cell treatments include allergic reaction or rejection of the cells by the patient&rsquo;s immune system and the development of cancer, both of which can be fatal.

The Best-Selling, Billion-Dollar Pills Tested on Homeless People ( http://www.geneticsandsociety.rsvp1.com/s13867gPbUUn )

by Carl Elliott, Medium
How the destitute and the mentally ill are being used as human lab rats.

Use of Experimental Ebola Drug Raises Red Flags Among Medical Experts ( http://www.geneticsandsociety.rsvp1.com/s1f3e6gPbUUt )

by Monte Morin, Los Angeles Times
The FDA has authorized use of an unapproved Ebola virus test under a special emergency-use provision, although efforts to develop a vaccine for the deadly illness are unlikely to bear fruit until 2015.

Genetic Testing of Citizens: A Backdoor Into Total Population Surveillance by Governments, Companies ( http://www.geneticsandsociety.rsvp1.com/s1f2a6gPbUUw )

by Helen Wallace, Epoch Times
The new Chief Executive of England's National Health Service wants to make people&rsquo;s personal genetic information the basis of their treatments.

In Search for Killer, DNA Sweep Exposes Intimate Family Secrets in Italy ( http://www.geneticsandsociety.rsvp1.com/s1e426gPbUUA )

by Elisabetta Povoledo, The New York Times
In the absence of other evidence, investigators embarked on the country&rsquo;s largest DNA dragnet, taking genetic samples from nearly 22,000 people.

Genome Project Will Transform Cancer Care ( http://www.geneticsandsociety.rsvp1.com/s125a7gPbUUC )

by Ian Sample, The Guardian [UK]
About 40,000 patients with cancer and rare diseases will have their genomes sequenced, which David Cameron claims will transform how serious diseases are diagnosed and treated

Study Shows Third Gene as Indicator for Breast Cancer ( http://www.geneticsandsociety.rsvp1.com/s1e6a6gPbUUG )

by Nicholas Bakalarn, The New York Times
Mutations in the gene raise risk in women by almost as much as mutations in BRCA1 and BRCA2, the genes implicated in most inherited cases.

Google Wants to Create a Map of What a Healthy Human Body Looks Like ( http://www.geneticsandsociety.rsvp1.com/s12367gPbUUJ )

by George Dvorsky, io9
Called the Baseline Project, it's different from other mass medical and genomic projects in that it's seeking to collect much larger and broader sets of new data.

F.D.A. Acts on Lab Tests Developed In-House ( http://www.geneticsandsociety.rsvp1.com/s1e066gPbUUN )

by Andrew Pollack, The New York Times
The FDA will start regulating medical laboratory testing, saying that tests used to make important treatment decisions must be vetted before they go into use.

( https://networkforgood.rsvp1.com/s12827gPbUUQ )

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