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Our work goes on | COVID-19 casts light on inequality and human biotechnologies
| From | Biopolitical News & Views <[email protected]> |
| Subject | Our work goes on | COVID-19 casts light on inequality and human biotechnologies |
| Date | April 9, 2020 11:28 PM |
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Links have been removed from this email. Learn more in the FAQ.
SUBSCRIBE ( [link removed] ) | WEBSITE ( [link removed] ) | FACEBOOK ( [link removed] ) | TWITTER ( [link removed] ) | YOUTUBE ( [link removed] ) | DONATE ( [link removed] ) | CONTACT ( mailto:[email protected] )
ANNOUNCEMENTS ( #ANN ) COMMENTARY ( #COMM ) CGS IN THE NEWS ( #MEDIA ) WHAT WE'RE READING ( #READ )
Our Work During the COVID-19 Crisis ( hhttps://www.geneticsandsociety.org/biopolitical-times/message-cgs-about-our-work-during-covid-19-crisis )
Marcy Darnovsky, Biopolitical Times | 03.24.2020
Our focus these days—like yours, I imagine—is largely on the spread of COVID-19 and its dire consequences. But our work goes on, and we’ll continue to share with you periodically in the weeks to come. This pandemic points to the relevance of concerns about social inequality: vulnerable groups are disproportionately experiencing risks and harms.
[ COMMENTARY SECTION HEADER ]
Catch Up on Free CGS Resources ( [link removed] )
CGS Staff | 03.24.2020
If social distancing is giving you time to read, watch, and listen (certainly not the case for everyone), we’ve assembled some of our favorite free resources about the current debates and conversations on the social justice implications of human biotechnologies. We’d love to hear what you think.
-------------------------
Appreciations and Best Wishes to our Communications Director
We bid a fond farewell to Communications Director Adrienne van der Valk, whose myriad contributions during her time at CGS helped us up our game in shaping public and policy conversations about the social justice implications of human genetics and assisted reproduction. We look forward to staying in touch with Adrienne as she launches her new venture, an independent design and communications company. Thank you, Adrienne!
[ COMMENTARY SECTION HEADER ]
Movie Review: Human Nature ( [link removed] )
Pete Shanks, Biopolitical Times | 04.02.2020
This documentary is really three movies in one: a useful explanation of the gene-editing tool CRISPR; the engrossing personal stories of two young people adjusting to life with a genetic disease; and an unfortunately one-sided discussion of the ethics of heritable human genome editing.
-------------------------
Heritable Human Genome Editing Is Not Inevitable ( [link removed] )
Donna Dickenson, Katie Hasson, Marcy Darnovsky, Project Syndicate | 03.17.2020
In recent years, the policy consensus barring genetic changes that would be passed down to a person’s every descendant has been challenged. Though some scientists and bioethicists are now focused on creating a detailed roadmap for moving forward, there's a strong case to be made that the previous consensus was correct.
-------------------------
A Genetic Information Privacy Act in California ( [link removed] )
Pete Shanks, Biopolitical Times | 03.13.2020
State Senator Thomas Umberg has introduced a bill, SB 980, to offer new protections for users of direct-to-consumer genetic testing, part of a growing trend for states to regulate the industry.
[ COMMENTARY SECTION HEADER ]
Doha Debates turns spotlight on future of genetics ( [link removed] )
Gulf Times | 03.13.2020
The question of where the line should be drawn in human gene editing, and if it should be allowed to create “superhumans,” was tackled by Doha Debates, and viewed by 4.9 million worldwide on Twitter. Katie Hasson debated with Julian Savulescu and Jamie Metzl, and won the popular vote. (Versions of this article were reprinted widely.)
-------------------------
[ COMMENTARY SECTION HEADER ]
Assisted Reproduction ( #1 ) | Animal Technologies ( #2 ) | Disability Rights ( #3 ) | Genomics ( #4 )
Society ( #5 ) | Stem Cells ( #6 ) | Surrogacy ( #7 )
GENOMICS
-------------------------
DNA tests grow more vital in hereditary breast cancer treatments. They also raise unanswerable questions. ( [link removed] )
Sarah Elizabeth Richards, Washington Post | 03.15.2020
Genetic counselors are often left with the job of trying to help patients cope with the emotional fallout: How should you react to knowing you have something lurking in your DNA that might make you sick later? In some cases, women have undergone potentially unnecessary surgeries to remove their breasts in response to a murky threat.
Polygenic Scores: It is time to get real when trying to predict educational performance ( [link removed] )
Cecile Janssens, eLife | 03.13.2020
A study of 3,500 children in the UK shows that data on socioeconomic background and previous educational achievements can better predict how students will perform at school than genetic data.
Curing HIV and sickle cell falls short if the most vulnerable populations are left out ( [link removed] )
Francis S. Collins, Fortune | 03.08.2020
The goal for both HIV and sickle cell disease is to develop a gene-based approach that can be given to a living person in one outpatient visit. The dream is to initiate African clinical trials in 10 years—using procedures that are not much more complicated than receiving a blood transfusion.
SURROGACY
-------------------------
New York State Legalizes Gestational Surrogacy ( [link removed] )
Matt Tracy, Gay City News | 04.02.2020
New York lawmakers approved a budget bill on April 2 that includes provisions legalizing compensated surrogacy in the state. The vote came after a protracted battle that involved divisions among progressives, feminists, and supporters of LGBTQ rights over safeguards for surrogates and egg providers, legal parentage at birth, and other issues.
How Coronavirus Is Affecting Surrogacy, Foster Care and Adoption ( [link removed] )
David Dodge, The New York Times | 04.01.2020
The pandemic is not just impacting parents and pregnant people — all prospective parents are facing new challenges.
Surrogacy: new parents stuck in US amid Covid-19 shutdown ( [link removed] )
Sirin Kale, The Guardian | 03.26.2020
A family lawyer and assisted reproduction specialist has been keeping an unofficial tally of the babies born via surrogate who are now trapped in the US, unable to reach the homes of their intended parents outside the country. According to her list there are 21; she also counts more than 100 babies in that situation who are expected to be born via surrogate in the coming months.
International surrogacy and COVID-19 ( [link removed] )
Alison Motluk, HeyReprotech Newsletter | 03.23.2020
Among the many people caught up in the COVID-19 nightmare are those involved in international surrogacy arrangements: expecting parents trying to get in, new parents trying to get out and others stuck in quarantine, unable to see their newborn children.
Coronavirus travel ban is having a worrying impact on queer parents expecting children via surrogacy ( [link removed] )
Lily Wakefield, Pink News | 03.23.2020
The coronavirus pandemic is having a dramatic effect on LGBT+ parents who are expecting children via surrogacy, according to an open letter from the Network of European LGBTIQ Families Associations.
ASSISTED REPRODUCTION
-------------------------
Getting Pregnant Was a Challenge. Then the Coronavirus Happened. ( [link removed] )
Christina Caron, The New York Times | 03.22.2020
Women across the US are learning that their fertility procedures need to be postponed for an indefinite period of time.
How Tech Will Change Fertility ( [link removed] )
Claire Tomkins, Forbes | 03.09.2020
Fertility treatments still have a success rate of below 50% on average and only account for 2% of live births. So, the question remains: How will the industry scale?
DISABILITY RIGHTS
-------------------------
I’m disabled and need a ventilator to live. Am I expendable during this pandemic? ( [link removed] )
Alice Wong, VOX | 04.04.2020
As medical rationing becomes a reality, “quality of life” measures threaten disabled people like me. Eugenics isn’t a relic from World War II; it’s alive today, embedded in our culture, policies, and practices in the form of systemic medical racism, ageism, and ableism, among other biases.
Americans With Disabilities Are Terrified ( [link removed] )
Elaine Godfrey, The Atlantic | 04.03.2020
They fear they could be denied life-saving treatment if they end up in the hospital with COVID-19.
The Coronavirus Pandemic Is Settling Some Old Arguments About Ableism ( [link removed] )
Andrew Pulrang, Forbes | 03.30.2020
In a pandemic, the thin veil of racial, financial, and social privilege that shields some disabled people from the worst of ableism is snatched away. And for disabled people of color, disabled people who are poor, and disabled people marginalized in countless other ways even in the best of times, the threat is even worse.
People With Intellectual Disabilities May Be Denied Lifesaving Care Under These Plans as Coronavirus Spreads ( [link removed] )
Amy Silverman, Arizona Daily Star | 03.27.2020
“What we’re seeing here is a clash between disability rights law and ruthless utilitarian logic,” said Ari Ne’eman. “What this is really about at the end of the day is whether our civil rights laws still apply in a pandemic. I think that’s a pretty core question as to who we are as a country.”
SOCIETY
-------------------------
Potential Inequities in New Medical Technologies ( [link removed] )
Eric B. Kmiec and Jonathan Marron, Scientific American | 03.28.2020
Even if we solve the ethical questions about using breakthrough techniques such as CRISPR, will all patients have equal access?
What the Pandemic Is Telling Us About Science, Politics, and Values ( [link removed] )
Daniel Sarewitz, Slate | 03.24.2020
The novel coronavirus offers up a powerful and extremely clear lesson about the appropriate role of science in helping to guide us toward a better future.
Police May Not Need a Warrant to Rummage Through Your Trash, But Warrantless Collection of DNA Is Unconstitutional ( [link removed] )
Jennifer Lynch, Electronic Frontier Foundation | 03.11.2020
The Electronic Frontier Foundation has filed an amicus brief in a South Dakota case arguing that the Fourth Amendment prohibits the police from surreptitiously collecting our DNA without a warrant.
STEM CELLS
-------------------------
$5 Million Allotted: California Stem Cell Agency Receives 19 Applications for Research Targeting Covid-19 ( [link removed] )
David Jensen, California Stem Cell Report | 04.08.2020
Nineteen scientists seeking to crush the coronavirus submitted applications this week for research grants from the California stem cell agency, which has set aside $5 million for the job.
Final Cyberspace Dash Underway for $5.5 Billion California Stem Cell Initiative ( [link removed] )
David Jensen, California Stem Cell Report | 04.03.2020
The campaign says it needs 35,000 more signatures in the next eight days to be sure that the multi-billion-dollar ballot initiative is presented to voters next fall.
Unproven Stem Cell Therapy Gets OK for Testing in Coronavirus Patients ( [link removed] )
Katie Thomas, The New York Times | 04.02.2020
The treatment, which has been promoted by President Trump’s personal lawyer Rudy Giuliani, will begin early-stage clinical trials.
ANIMAL TECHNOLOGIES
-------------------------
Mutants or miracles? ( [link removed] )
Michael Slezak and Penny Timm, ABC Australia | 03.14.2020
They were the genetically modified cows that would change the dairy industry forever. Then it all went wrong and the experiment ended up in an Australian paddock.
Can We Bring Back Mammoths From Extinction? Probably Not — Here’s Why ( [link removed] )
Riley Black, Discover | 03.09.2020
Bringing the beasts back from the dead is a tempting prospect. But genetic evidence suggests we may not fully understand what makes a mammoth.
SUBSCRIBE ( [link removed] ) | WEBSITE ( [link removed] ) | ABOUT US ( [link removed] ) | WHO WE ARE ( [link removed] ) | CONTACT ( mailto:[email protected] )
( [link removed] )
-------------------------
This e-mail was sent to [email protected] by [email protected].
Center for Genetics & Society, 1122 University Ave., Suite 100, Berkeley, California 94702
If you no longer wish to receive commercial e-mail messages from [email protected], please select the following link: Remove ( [link removed] ).
ANNOUNCEMENTS ( #ANN ) COMMENTARY ( #COMM ) CGS IN THE NEWS ( #MEDIA ) WHAT WE'RE READING ( #READ )
Our Work During the COVID-19 Crisis ( hhttps://www.geneticsandsociety.org/biopolitical-times/message-cgs-about-our-work-during-covid-19-crisis )
Marcy Darnovsky, Biopolitical Times | 03.24.2020
Our focus these days—like yours, I imagine—is largely on the spread of COVID-19 and its dire consequences. But our work goes on, and we’ll continue to share with you periodically in the weeks to come. This pandemic points to the relevance of concerns about social inequality: vulnerable groups are disproportionately experiencing risks and harms.
[ COMMENTARY SECTION HEADER ]
Catch Up on Free CGS Resources ( [link removed] )
CGS Staff | 03.24.2020
If social distancing is giving you time to read, watch, and listen (certainly not the case for everyone), we’ve assembled some of our favorite free resources about the current debates and conversations on the social justice implications of human biotechnologies. We’d love to hear what you think.
-------------------------
Appreciations and Best Wishes to our Communications Director
We bid a fond farewell to Communications Director Adrienne van der Valk, whose myriad contributions during her time at CGS helped us up our game in shaping public and policy conversations about the social justice implications of human genetics and assisted reproduction. We look forward to staying in touch with Adrienne as she launches her new venture, an independent design and communications company. Thank you, Adrienne!
[ COMMENTARY SECTION HEADER ]
Movie Review: Human Nature ( [link removed] )
Pete Shanks, Biopolitical Times | 04.02.2020
This documentary is really three movies in one: a useful explanation of the gene-editing tool CRISPR; the engrossing personal stories of two young people adjusting to life with a genetic disease; and an unfortunately one-sided discussion of the ethics of heritable human genome editing.
-------------------------
Heritable Human Genome Editing Is Not Inevitable ( [link removed] )
Donna Dickenson, Katie Hasson, Marcy Darnovsky, Project Syndicate | 03.17.2020
In recent years, the policy consensus barring genetic changes that would be passed down to a person’s every descendant has been challenged. Though some scientists and bioethicists are now focused on creating a detailed roadmap for moving forward, there's a strong case to be made that the previous consensus was correct.
-------------------------
A Genetic Information Privacy Act in California ( [link removed] )
Pete Shanks, Biopolitical Times | 03.13.2020
State Senator Thomas Umberg has introduced a bill, SB 980, to offer new protections for users of direct-to-consumer genetic testing, part of a growing trend for states to regulate the industry.
[ COMMENTARY SECTION HEADER ]
Doha Debates turns spotlight on future of genetics ( [link removed] )
Gulf Times | 03.13.2020
The question of where the line should be drawn in human gene editing, and if it should be allowed to create “superhumans,” was tackled by Doha Debates, and viewed by 4.9 million worldwide on Twitter. Katie Hasson debated with Julian Savulescu and Jamie Metzl, and won the popular vote. (Versions of this article were reprinted widely.)
-------------------------
[ COMMENTARY SECTION HEADER ]
Assisted Reproduction ( #1 ) | Animal Technologies ( #2 ) | Disability Rights ( #3 ) | Genomics ( #4 )
Society ( #5 ) | Stem Cells ( #6 ) | Surrogacy ( #7 )
GENOMICS
-------------------------
DNA tests grow more vital in hereditary breast cancer treatments. They also raise unanswerable questions. ( [link removed] )
Sarah Elizabeth Richards, Washington Post | 03.15.2020
Genetic counselors are often left with the job of trying to help patients cope with the emotional fallout: How should you react to knowing you have something lurking in your DNA that might make you sick later? In some cases, women have undergone potentially unnecessary surgeries to remove their breasts in response to a murky threat.
Polygenic Scores: It is time to get real when trying to predict educational performance ( [link removed] )
Cecile Janssens, eLife | 03.13.2020
A study of 3,500 children in the UK shows that data on socioeconomic background and previous educational achievements can better predict how students will perform at school than genetic data.
Curing HIV and sickle cell falls short if the most vulnerable populations are left out ( [link removed] )
Francis S. Collins, Fortune | 03.08.2020
The goal for both HIV and sickle cell disease is to develop a gene-based approach that can be given to a living person in one outpatient visit. The dream is to initiate African clinical trials in 10 years—using procedures that are not much more complicated than receiving a blood transfusion.
SURROGACY
-------------------------
New York State Legalizes Gestational Surrogacy ( [link removed] )
Matt Tracy, Gay City News | 04.02.2020
New York lawmakers approved a budget bill on April 2 that includes provisions legalizing compensated surrogacy in the state. The vote came after a protracted battle that involved divisions among progressives, feminists, and supporters of LGBTQ rights over safeguards for surrogates and egg providers, legal parentage at birth, and other issues.
How Coronavirus Is Affecting Surrogacy, Foster Care and Adoption ( [link removed] )
David Dodge, The New York Times | 04.01.2020
The pandemic is not just impacting parents and pregnant people — all prospective parents are facing new challenges.
Surrogacy: new parents stuck in US amid Covid-19 shutdown ( [link removed] )
Sirin Kale, The Guardian | 03.26.2020
A family lawyer and assisted reproduction specialist has been keeping an unofficial tally of the babies born via surrogate who are now trapped in the US, unable to reach the homes of their intended parents outside the country. According to her list there are 21; she also counts more than 100 babies in that situation who are expected to be born via surrogate in the coming months.
International surrogacy and COVID-19 ( [link removed] )
Alison Motluk, HeyReprotech Newsletter | 03.23.2020
Among the many people caught up in the COVID-19 nightmare are those involved in international surrogacy arrangements: expecting parents trying to get in, new parents trying to get out and others stuck in quarantine, unable to see their newborn children.
Coronavirus travel ban is having a worrying impact on queer parents expecting children via surrogacy ( [link removed] )
Lily Wakefield, Pink News | 03.23.2020
The coronavirus pandemic is having a dramatic effect on LGBT+ parents who are expecting children via surrogacy, according to an open letter from the Network of European LGBTIQ Families Associations.
ASSISTED REPRODUCTION
-------------------------
Getting Pregnant Was a Challenge. Then the Coronavirus Happened. ( [link removed] )
Christina Caron, The New York Times | 03.22.2020
Women across the US are learning that their fertility procedures need to be postponed for an indefinite period of time.
How Tech Will Change Fertility ( [link removed] )
Claire Tomkins, Forbes | 03.09.2020
Fertility treatments still have a success rate of below 50% on average and only account for 2% of live births. So, the question remains: How will the industry scale?
DISABILITY RIGHTS
-------------------------
I’m disabled and need a ventilator to live. Am I expendable during this pandemic? ( [link removed] )
Alice Wong, VOX | 04.04.2020
As medical rationing becomes a reality, “quality of life” measures threaten disabled people like me. Eugenics isn’t a relic from World War II; it’s alive today, embedded in our culture, policies, and practices in the form of systemic medical racism, ageism, and ableism, among other biases.
Americans With Disabilities Are Terrified ( [link removed] )
Elaine Godfrey, The Atlantic | 04.03.2020
They fear they could be denied life-saving treatment if they end up in the hospital with COVID-19.
The Coronavirus Pandemic Is Settling Some Old Arguments About Ableism ( [link removed] )
Andrew Pulrang, Forbes | 03.30.2020
In a pandemic, the thin veil of racial, financial, and social privilege that shields some disabled people from the worst of ableism is snatched away. And for disabled people of color, disabled people who are poor, and disabled people marginalized in countless other ways even in the best of times, the threat is even worse.
People With Intellectual Disabilities May Be Denied Lifesaving Care Under These Plans as Coronavirus Spreads ( [link removed] )
Amy Silverman, Arizona Daily Star | 03.27.2020
“What we’re seeing here is a clash between disability rights law and ruthless utilitarian logic,” said Ari Ne’eman. “What this is really about at the end of the day is whether our civil rights laws still apply in a pandemic. I think that’s a pretty core question as to who we are as a country.”
SOCIETY
-------------------------
Potential Inequities in New Medical Technologies ( [link removed] )
Eric B. Kmiec and Jonathan Marron, Scientific American | 03.28.2020
Even if we solve the ethical questions about using breakthrough techniques such as CRISPR, will all patients have equal access?
What the Pandemic Is Telling Us About Science, Politics, and Values ( [link removed] )
Daniel Sarewitz, Slate | 03.24.2020
The novel coronavirus offers up a powerful and extremely clear lesson about the appropriate role of science in helping to guide us toward a better future.
Police May Not Need a Warrant to Rummage Through Your Trash, But Warrantless Collection of DNA Is Unconstitutional ( [link removed] )
Jennifer Lynch, Electronic Frontier Foundation | 03.11.2020
The Electronic Frontier Foundation has filed an amicus brief in a South Dakota case arguing that the Fourth Amendment prohibits the police from surreptitiously collecting our DNA without a warrant.
STEM CELLS
-------------------------
$5 Million Allotted: California Stem Cell Agency Receives 19 Applications for Research Targeting Covid-19 ( [link removed] )
David Jensen, California Stem Cell Report | 04.08.2020
Nineteen scientists seeking to crush the coronavirus submitted applications this week for research grants from the California stem cell agency, which has set aside $5 million for the job.
Final Cyberspace Dash Underway for $5.5 Billion California Stem Cell Initiative ( [link removed] )
David Jensen, California Stem Cell Report | 04.03.2020
The campaign says it needs 35,000 more signatures in the next eight days to be sure that the multi-billion-dollar ballot initiative is presented to voters next fall.
Unproven Stem Cell Therapy Gets OK for Testing in Coronavirus Patients ( [link removed] )
Katie Thomas, The New York Times | 04.02.2020
The treatment, which has been promoted by President Trump’s personal lawyer Rudy Giuliani, will begin early-stage clinical trials.
ANIMAL TECHNOLOGIES
-------------------------
Mutants or miracles? ( [link removed] )
Michael Slezak and Penny Timm, ABC Australia | 03.14.2020
They were the genetically modified cows that would change the dairy industry forever. Then it all went wrong and the experiment ended up in an Australian paddock.
Can We Bring Back Mammoths From Extinction? Probably Not — Here’s Why ( [link removed] )
Riley Black, Discover | 03.09.2020
Bringing the beasts back from the dead is a tempting prospect. But genetic evidence suggests we may not fully understand what makes a mammoth.
SUBSCRIBE ( [link removed] ) | WEBSITE ( [link removed] ) | ABOUT US ( [link removed] ) | WHO WE ARE ( [link removed] ) | CONTACT ( mailto:[email protected] )
( [link removed] )
-------------------------
This e-mail was sent to [email protected] by [email protected].
Center for Genetics & Society, 1122 University Ave., Suite 100, Berkeley, California 94702
If you no longer wish to receive commercial e-mail messages from [email protected], please select the following link: Remove ( [link removed] ).
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