Hot Topics: Genetics

Blog Posts (160)

December 13, 2018

“The Babies are the Experiment”

By Jon Holmlund   The Thursday, Dec 13 edition of the Wall Street Journal carries this headline:  “Doubts Arise Over Gene-Editing Claim.”  The work behind the recent report that the world’s first two gene-edited babies had been born has been publicly discussed, but the details have not yet been published for full scientific review.  Apparently …

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December 5, 2018

Ethical Guidelines for DNA testing in Migrant Family Reunification

This blog post will appear in a future issue of the American Journal of Bioethics

by Nita Farahany, JD, PhD; Saheel Chodavadia; and Sara H.

December 5, 2018

Gene editing for genetic enhancement

By Steve Phillips I appreciate the prior posts by Jon Holmlund and Mark McQuain regarding the recent announcement of the birth of genetically modified twins in China. Much has been written about why this should not have been done, but something very significant has been left out of most of those responses. They have failed …

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December 4, 2018

The Genetic Singularity Point has Arrived

By Mark McQuain November 2018 will go down as one of the most pivotal points in human history. Jon Holmlund covered the facts in his last blog entry. Regardless of what you think about the ethics of He Jiankui’s recent use of CRISPR to alter the human genomes of IVF embryos and his decision to …

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November 27, 2018

Birth of Twins from Embryo Editing Raise Ethical, Legal, and Social Issues

Updated November 28 at 8:30am EST

by Craig Klugman, Ph.D.

The film GATTACA turned 20 years old this year. The premise of that film is a society where DNA is viewed as predictive of everything: Your intelligence, physical abilities, your health, even how long you will live.…

November 20, 2018

Sprinting Down the Road on “The Children We Want”

By Mark McQuain Almost exactly one year ago, this blog asked rhetorically whether your polygenic risk score was a good thing. Jon Holmlund raised this issue again last week, mentioning a company called Genomic Prediction. This company’s claim about the merits of their technology deserves close ethical scrutiny and is my reason for mentioning them …

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October 26, 2018

BioethicsTV (October 22-26): #TheResident, #NewAmsterdam, #ChicagoMed

by Craig Klugman, Ph.D.

“Exploring ethical issues in TV medical dramas”

Jump to The Resident (Season 2; Episode 5): Buying Thought Leaders and Handsy Docs; Jump to New Amsterdam (Season 1; Episode 5): Gun shootings; Jump to Chicago Med (Season 4; Episode 5): Genetic secrets and duty to inform

Resident (Season 2; Episode 5): Buying Thought Leaders and Handsy Docs

Bell negotiates a deal with a new start-up medical device company: For a substantial discount, he will make the company the sole source of medical devices at the hospital.…

September 27, 2018

Investigative Genealogy: Guilty by Familial Association

by Craig Klugman, Ph.D.

This week I was on a panel discussing the topic of genealogical searchingrunning a DNA sample found at a crime scene against criminal, public and commercial DNA databases with the goal of not finding a suspect, but to find a relative of the suspect.…

September 7, 2018

RACeing to Deregulate: Can We Afford Less Oversight of Gene Transfer Research?

by Craig Klugman, Ph.D.

 “As gene therapy continues to change, so must the federal framework set up to oversee it.”-Francis Collins & Scott Gottlieb

In one of his first acts of office, Trump ordered executive agencies to reduce regulations.…

August 3, 2018

Public input into gene-editing decisions

Lyme disease is caused by a type of bacteria that lives in mice, which are considered a “reservoir” for the disease-causing agent.  Ticks bite the mice, pick up the bacteria, and then infect people when they bite them.  (Ticks are called the “vector” for the disease.) If mice were immune to the bacteria, their immune …

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Published Articles (67)

AJOB Primary Research: Volume 9 Issue 3 - Nov 2018

Parents’ attitudes toward consent and data sharing in biobanks: A multisite experimental survey Armand H. Matheny Antommaria, Kyle B. Brothers, John A. Myers, Yana B. Feygin, Sharon A. Aufox, Murray H. Brilliant, Pat Conway, Stephanie M. Fullerton, Nanibaa’ A. Garrison, Carol R. Horowitz, Gail P. Jarvik, Rongling Li, Evette J. Ludman, Catherine A. McCarty, Jennifer B. McCormick, Nathaniel D. Mercaldo, Melanie F. Myers, Saskia C. Sanderson, Martha J. Shrubsole, Jonathan S. Schildcrout, Janet L. Williams, Maureen E. Smith, Ellen Wright Clayton & Ingrid A. Holm

American Journal of Bioethics: Volume 18 Issue 8 - Aug 2018

Ethical Considerations in the Manufacture, Sale, and Distribution of Genome Editing Technologies Jeremy Sugarman, Supriya Shivakumar, Martha Rook, Jeanne F. Loring, Christoph Rehmann-Sutter, Jochen Taupitz, Jutta Reinhard-Rupp & Steven Hildemann

American Journal of Bioethics: Volume 18 Issue 4 - Apr 2018

Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research Stephanie A. Kraft, Mildred K. Cho, Katherine Gillespie, Meghan Halley, Nina Varsava, Kelly E. Ormond, Harold S. Luft, Benjamin S. Wilfond & Sandra Soo-Jin Lee

AJOB Primary Research: Volume 8 Issue 1 - Mar 2018

Understanding variations in secondary findings reporting practices across U.S. genome sequencing laboratories Sara L. Ackerman PhD, MPH & Barbara A. Koenig

AJOB Primary Research: Volume 8 Issue 4 - Dec 2017

“Will they be good enough parents?”: Ethical dilemmas, views, and decisions among assisted reproductive technology (ART) providers Robert Klitzman

AJOB Primary Research: Volume 8 Issue 4 - Dec 2017

How should we deal with misattributed paternity? A survey of lay public attitudes Georgia Lowe, Jonathan Pugh, Guy Kahane, Louise Corben, Sharon Lewis, Martin Delatycki & Julian Savulescu

American Journal of Bioethics: Volume 17 Issue 7 - Jul 2017

Modernizing Research Regulations Is Not Enough: It's Time to Think Outside the Regulatory Box Suzanne M. Rivera, Kyle B. Brothers, R. Jean Cadigan, Heather L. Harrell, Mark A. Rothstein, Richard R. Sharp & Aaron J. Goldenberg

AJOB Primary Research: Volume 8 Issue 2 - Apr 2017

When bins blur: Patient perspectives on categories of results from clinical whole genome sequencing Leila Jamal, Jill O. Robinson, Kurt D. Christensen, Jennifer Blumenthal-Barby, Melody J. Slashinski, Denise Lautenbach Perry, Jason L. Vassy, Julia Wycliff, Robert C. Green & Amy L. McGuire

American Journal of Bioethics: Volume 17 Issue 5 - May 2017

Genetic Fingerprints and National Security Beau P. Sperry, Megan Allyse & Richard R. Sharp

American Journal of Bioethics: Volume 17 Issue 4 - Apr 2017

Psychiatric Genomics and Mental Health Treatment: Setting the Ethical Agenda Camillia Kong, Michael Dunn & Michael Parker

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News (946)

December 14, 2018 11:43 am

Gene editing: who should decide? (Nature)

Last month’s announcement claiming the birth of the world’s first genome-edited babies has sparked a furore over how to regulate this cutting-edge technology (see Nature 563, 607–608; 2018, and Nature564, 5; 2018). In our view, piling up scientist-led conferences modelled on Asilomar in 1975 (see Nature 526, 293–294; 2015) without any clear consensus is futile.

December 11, 2018 9:15 am

The CRISPR Baby Scandal Gets Worse by the Day (The Atlantic)

Before last week, few people had heard the name He Jiankui. But on November 25, the young Chinese researcher became the center of a global firestorm when it emerged that he had allegedly made the first crispr-edited babies, twin girls named Lulu and Nana. Antonio Regalado broke the story for MIT Technology Review, and He himself described the experiment at an international gene-editing summit in Hong Kong. After his talk, He revealed that another early pregnancy is under way.

It is still unclear if He did what he claims to have done. Nonetheless, the reaction was swift and negative. The crispr pioneer Jennifer Doudna says she was “horrified,” NIH Director Francis Collins said the experiment was “profoundly disturbing,” and even Julian Savulescu, an ethicist who has described gene-editing research as “a moral necessity,” described He’s work as “monstrous.”

December 9, 2018 12:47 pm

Why Are Scientists So Upset About the First Crispr Babies? (The New York Times)

A Chinese scientist recently claimed he had produced the world’s first gene-edited babies, setting off a global firestorm. If true — the scientist has not yet published data that would confirm it — his actions would be a sensational breach of international scientific conventions. Although gene editing holds promise to potentially correct dangerous disease-causing mutations and treat some medical conditions, there are many safety and ethical concerns about editing human embryos.

Here are answers to some of the numerous questions swirling around this development.

December 6, 2018 4:15 pm

Should We Edit the Human Germline? Is Consensus Possible or Even Desirable? (The Hastings Center)

On the one hand, reports of a rogue scientist, He Jiankui, who contravened the scientific and ethical norms that should guide the development of human genome editing reinforces the need for clarity about those norms and international monitoring of advances in the field. On the other hand, it shows the weaknesses and limitations of voluntary efforts – like the summit – to guide scientists’ practices. They lack any real enforcement power on their own, and have largely served to ensure that human genome editing research can continue, rather than promote reflection on whether we should edit the human germline in the first place.

November 30, 2018 11:59 am

China Halts Work by Scientist Who Says He Edited Babies’ Genes (New York Times)

BEIJING — China said on Thursday that it had suspended the work of a scientist who claims to have created the world’s first genetically edited babies, saying his conduct appeared to be unethical and in violation of Chinese law.

The scientist, He Jiankui, announced on Monday that he had used the gene-editing technique Crispr to alter embryos, which he implanted in the womb of a woman who gave birth to twin girls this month. At an international conference on Wednesday, he asserted that he was proud of what he had done.

November 30, 2018 9:00 am

‘Landmark study’ shows brain cells revamp their DNA, perhaps sparking Alzheimer’s disease (Science)

Unlike most cells in our bodies, the neurons in our brain can scramble their genes, scientists have discovered. This genome tampering may expand the brain’s protein repertoire, but it may also promote Alzheimer’s disease, their study suggests.

“It’s potentially one of the biggest discoveries in molecular biology in years,” says Geoffrey Faulkner, a molecular biologist at the University of Queensland in Brisbane, Australia, who wasn’t connected to the research. “It is a landmark study,” agrees clinical neurologist Christos Proukakis of University College London.

November 27, 2018 1:46 pm

Researcher, American professor behind baby gene editing claims now under investigation (USA Today)

A Chinese researcher claiming to have led a team that genetically edited human babies is now under investigation, as well as an American professor who might have helped him.

He Jiankui, an associate professor at Shenzhen’s Southern University of Science and Technology of China, revealed his gene editing work on Monday to an organizer of an international conference on gene editing in Hong Kong. He told the Associated Press he altered the DNA of twin girls born this month to resist HIV and AIDS virus. He said he’s altered embryos for seven couples in fertility treatments, but only had one pregnancy result.

November 26, 2018 12:42 pm

Chinese researcher claims first gene-edited babies (AP News)

A Chinese researcher claims that he helped make the world’s first genetically edited babies — twin girls born this month whose DNA he said he altered with a powerful new tool capable of rewriting the very blueprint of life.

If true, it would be a profound leap of science and ethics.

A U.S. scientist said he took part in the work in China, but this kind of gene editing is banned in the United States because the DNA changes can pass to future generations and it risks harming other genes.

November 13, 2018 9:00 am

Genetics research 'biased towards studying white Europeans' (The Guardian)

People from minority ethnic backgrounds are set to lose out on medical benefits of genetics research due to an overwhelming bias towards studying white European populations, a leading scientist has warned.

Prof David Curtis, a geneticist and psychiatrist at University College London, has called on funding bodies to do more to address the emerging issue that genetic tests developed using samples from white Europeans can give meaningless results when applied to other ethnic groups. The problem could intensify as the clinical applications of genetics expand over the next decade.

November 12, 2018 9:00 am

A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States (PLOS)

The picture of genetic privacy that emerges from this systematic literature review is complex and riddled with gaps. When asked specifically “are you worried about genetic privacy,” the general public, patients, and professionals frequently said yes. In many cases, however, that question was posed poorly or only in the most general terms. While many participants expressed concern that genomic and medical information would be revealed to others, respondents frequently seemed to conflate privacy, confidentiality, control, and security. People varied widely in how much control they wanted over the use of data.

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