The National Academies of Sciences and National Academy of Medicine today published a report Human Genome Editing: Science, Ethics, and Governance that contends with uses of gene editing for human reproductive purposes, prospects which have been brought into vivid reality since the emergence of new biotechnology tools such as the gene modification system, Crispr-Cas9. The report suggests limitations on genetic engineering to the heritable germline code of embryos, or even earlier upstream in the process, sperm and ovum, which convey information passed on to subsequent generations.
However, the report appears to exclude the public from participation and concludes that clinical trials using heritable germline genome editing should be permitted. They should notnot without public discussion and a more conscious evaluation of how this impacts social standing, stigma and identity, ethics that scientists often tendto cite pro forma and then swiftly scuttle.
The statement is a striking reversal in outlook of leadership since just a year ago in December 2015, when the International Summit on Human Gene Editing was held at the National Academy of Sciences in Washington D.C., a conference which I attended, also drawing Nobel laureates, lawmakers, and bioethicists from across the globe, and declaring that a broad societal consensus be attained before moving ahead with altering heritable code. Indeed, weeks after the Summit, U.S. lawmakers added a rider to an omnibus spending bill to prevent the Food and Drug Administration from spending time or money reviewing applications of gene modification to heritable code.
Unlike more than 40 other countries, and an international treaty Council of Europe Convention on Human Rights and Biomedicine, the U.S. does not have a legal ban on modification to heritable code, but it does have a strong regulatory framework on drugs, and federal agencies treat Crispr-Cas9 as a drug. But the limitations on heritable code are only in effect temporarily in so far that spending is restricted on applications FDA can review.
Marcy Darnovsky, director for the Center for Genetics and Society noted the report appears to send from scientists to lawmakers a green light for proceeding with efforts to engineer the genes and traits that are passed on to future children and generations while noting that it excludes the public from participation in deciding whether human germline modification is acceptable in the first place.
In fact, there are a number of critical arguments on how we determine what is acceptable. The first is technical. The field of genetics is by no means accomplished. A group called the Human Aggregation Consortium just last year revealed that of 192 high frequency genetic variants that had previously been considered pathogenic, only nine are likely harmfulan important clarification for anyone wanting to recode their genome. Most mutations have very small effects on biological traits, and we know very little about how genetic variants enhance or diminish other genetic variants and differ based on genetic background.
Secondly, as Darnovsky, and Hille Haker, a bioethicist from Loyola University in Chicago, have pointed out that gene modification in combination with reproductive technologies to engender a genetically connected child is not a medical necessity. There is a difference between a negative right, which is a freedom from, a harm, and a full positive right, which is a freedom to access or gain some benefits. If a gene-edited child were a full positive right, society would be required to pay for all of its citizens to have children, apply genetic tests, gene modification and in vitro fertilization techniques to anyone who wants one. Importantly, scientists who patent gene modification systems such as Crispr-Cas9 have an interest in selling it as much as possible, which means the scientists themselves cannot be left solely responsible for shaping the moral frameworkthe public has an important role to play in shaping the morays around science today more than ever. Andthe debates are becoming more nuanced and sophisticated as gene editing systems such as Crispr-Cas9 allow us to do things like circumvent the oldcause celebreof altering human embryos, by editing heritable code in the sperm or eggs.
Our genomes are a constantly undergoing alteration and it would be incorrect to conceive of them as sacrosanct. Genes are shuffled with each new generation so its unlikely that gene editing will give some families permanent advantages. The theory of evolution suggests that we adapt to local conditions rather than progress to a more perfect form. But gene modification risks market based eugenics, meaning putting values on certain traits, and seeking to eliminate other traits, when genetic variants that contribute to many features such as autism, neuropsychiatric disorders, may be less a disease as ways of being in the world.
Evolution does not create values, we do. And we risk molding our children into commodities we would like to have, rather than emphasizing the people they can become. Darnovsky wrote the problem is stigmatizing people with disabilities, exacerbating existing inequalities, and introducing new eugenic abuses. Strangely, theres no apparent connection between those dire risks and the recommendation to move ahead. Thephilosopher-scientist Jean Rostand wrote a generation ago, science hasmade us godsevenbeforewe are worthy of beingmen. But those are professional experts. Its time to hear more from the public on what we think.
Jim Kozubek is the author ofModern Prometheus: Editing the Human Genome with Crispr-Cas9
The views expressed are those of the author(s) and are not necessarily those of Scientific American.
Jim Kozubek
Jim Kozubek is the author of Modern Prometheus: Editing the Human Genome with Crispr-Cas9 (Cambridge University Press)
Credit: Nick Higgins
Read more:
- Who are We? - November 7th, 2009 [November 7th, 2009]
- Vilsack targeted for his Pro-GMOs stand - November 7th, 2009 [November 7th, 2009]
- Call for technology to produce cellulosic ethanol - November 7th, 2009 [November 7th, 2009]
- Kenyan scientists weigh on GMOs - November 7th, 2009 [November 7th, 2009]
- Indian researcher makes a case for biotechnology - November 7th, 2009 [November 7th, 2009]
- Michigan smoothens the way for alternative energy investors - November 7th, 2009 [November 7th, 2009]
- Link of ethanol use to high food prices questioned - November 7th, 2009 [November 7th, 2009]
- EU challenges France on GM Maize - November 7th, 2009 [November 7th, 2009]
- POET rolls out cellulosic ethanol plant - November 7th, 2009 [November 7th, 2009]
- There’s a bright future for cellulosic ethanol investment - November 7th, 2009 [November 7th, 2009]
- Cellulosic ethanol can considerably reduce gasoline use by 2030 - November 7th, 2009 [November 7th, 2009]
- Human Genetic Engineering - Background - November 7th, 2009 [November 7th, 2009]
- Human Genetic Engineering - History - November 7th, 2009 [November 7th, 2009]
- Human Genetic Engineering - Methods - November 7th, 2009 [November 7th, 2009]
- Human Genetic Engineering - Uses - November 7th, 2009 [November 7th, 2009]
- Human Genetic Engineering - Controversy - November 7th, 2009 [November 7th, 2009]
- Human Genetic Engineering - In popular culture - November 7th, 2009 [November 7th, 2009]
- Human genetic engineering - An Introduction - November 7th, 2009 [November 7th, 2009]
- Human Genetic Engineering - A Very Hot Issue! - November 7th, 2009 [November 7th, 2009]
- What are the risks of genetic engineering in humans? (human genetic engineering) - November 7th, 2009 [November 7th, 2009]
- What are the benefits of human genetic engineering? (human genetic engineering) - November 7th, 2009 [November 7th, 2009]
- Genetic Engineering - Ethics and Controversy - November 7th, 2009 [November 7th, 2009]
- Genetic Engineering Ethics In Science Fiction - November 7th, 2009 [November 7th, 2009]
- Genetic Engineering Ethics - November 7th, 2009 [November 7th, 2009]
- Welcome to Pest Control Exterminator Network - December 13th, 2009 [December 13th, 2009]
- OMD - Genetic Engineering - August 27th, 2011 [August 27th, 2011]
- X-Ray Spex - Genetic Engineering - August 27th, 2011 [August 27th, 2011]
- Ancient Alien Nephilim, Giants, Mutants, Genetic Engineering, and Hybrids (2-6) - August 28th, 2011 [August 28th, 2011]
- Human-Plant Hybrid (Genetic Engineering at Home) - August 28th, 2011 [August 28th, 2011]
- Ancient Alien Nephilim, Giants, Mutants, Genetic Engineering, and Hybrids (1-6) - August 29th, 2011 [August 29th, 2011]
- 3. Genetic Engineering - August 29th, 2011 [August 29th, 2011]
- Genetic engineering nightmare - August 31st, 2011 [August 31st, 2011]
- Ancient Alien Nephilim, Giants, Mutants, Genetic Engineering, and Hybrids (3-6) - August 31st, 2011 [August 31st, 2011]
- Future of genetic engineering - by Futurist Dr Patrick Dixon. Genetic mutations and genetic disorders. Gene science by conference keynote speaker - September 2nd, 2011 [September 2nd, 2011]
- Genetic engineering: The world's greatest scam? - September 3rd, 2011 [September 3rd, 2011]
- Watch Fed Up! Genetic Engineering, Industrial Agriculture and Sustainable Alternatives Full Movie Online Part 1/15 - September 3rd, 2011 [September 3rd, 2011]
- Ancient Alien Nephilim, Giants, Mutants, Genetic Engineering, and Hybrids (5-6) - September 5th, 2011 [September 5th, 2011]
- Genetic Engineering, Humans with Animals. - September 6th, 2011 [September 6th, 2011]
- Is Genetic Engineering Good for the Environment? - September 7th, 2011 [September 7th, 2011]
- Open Source Food and Genetic Engineering - Michael Pollan - September 10th, 2011 [September 10th, 2011]
- Ancient Alien ( demons ) Nephilim Giants, Mutants Genetic Engineering and Hybrids.avi - September 11th, 2011 [September 11th, 2011]
- MUST SEE : Genetic Engineering Corn Grows in Sand ! For Those That Appreciate Nature ! - September 12th, 2011 [September 12th, 2011]
- Designing Humanity - Genetic Engineering - September 14th, 2011 [September 14th, 2011]
- Genetic Modification | QUEEN ANNE SCIENCE CAFE - September 14th, 2011 [September 14th, 2011]
- Genetic Engineering in California Agriculture - September 15th, 2011 [September 15th, 2011]
- Genetic Engineering Animation - September 15th, 2011 [September 15th, 2011]
- Proof Of Ancient Genetic Engineering - September 15th, 2011 [September 15th, 2011]
- Joad Cressbeckler Fears Genetic Modification Causes 'Wrath-Minded Taters' - September 16th, 2011 [September 16th, 2011]
- Ethical Concerns With Genetic Engineering - September 16th, 2011 [September 16th, 2011]
- Scientists under Attack - Genetic Engineering in the magnetic Field of Money TRAILER - September 17th, 2011 [September 17th, 2011]
- Genetic Modification - September 18th, 2011 [September 18th, 2011]
- Genetic Engineering Not a New Science - Pamela Ronald - September 23rd, 2011 [September 23rd, 2011]
- The Island of Dr. Moreau prt. IV - September 28th, 2011 [September 28th, 2011]
- Ancient Alien Nephilim, Giants, Mutants, Genetic Engineering, and Hybrids (4-6) - September 30th, 2011 [September 30th, 2011]
- 4. Genetic Engineering (cont.) - October 2nd, 2011 [October 2nd, 2011]
- Ancient Alien Nephilim, Giants, Mutants, Genetic Engineering, and Hybrids (6-6) - October 4th, 2011 [October 4th, 2011]
- Islands at Risk (Part 3) - Genetic Engineering in Hawai'i - October 4th, 2011 [October 4th, 2011]
- Morgellons Is Genetic Engineering , A Silent Superbug - October 4th, 2011 [October 4th, 2011]
- Islands at Risk (Part 2) - Genetic Engineering in Hawai'i - October 4th, 2011 [October 4th, 2011]
- The Ethics of Genetically Engineering Children - Arthur Caplan - October 4th, 2011 [October 4th, 2011]
- Disney Geneticists Debut New Child Stars - October 4th, 2011 [October 4th, 2011]
- Genetic Engineering and Society, Lecture 1a, Honors Collegium 70A, UCLA - October 4th, 2011 [October 4th, 2011]
- OMD - Genetic Engineering (312mm Version) (Audio Only) - October 4th, 2011 [October 4th, 2011]
- The difference between normal and genetically modified food - October 4th, 2011 [October 4th, 2011]
- Bioethics Of Human Genetic Engineering - Documentary Video - October 6th, 2011 [October 6th, 2011]
- Islands at Risk (Part 1) - Genetic Engineering in Hawai'i - October 6th, 2011 [October 6th, 2011]
- Coast To Coast AM: Genetic Engineering 3-24-2011 Download Link - October 6th, 2011 [October 6th, 2011]
- Lloyd Pye - Ancient Genetic Engineering - October 13th, 2011 [October 13th, 2011]
- X RAY SPEX - ROUNDHOUSE LONDON GENETIC ENGINEERING - Video - October 13th, 2011 [October 13th, 2011]
- OMD - Genetic Engineering 1983 - Video - October 14th, 2011 [October 14th, 2011]
- OMD - GENETIC ENGINEERING - Video - October 14th, 2011 [October 14th, 2011]
- Mechanism of Recombination - Video - October 15th, 2011 [October 15th, 2011]
- Harvard Prof. Michael Sandel on Human Genetic Modification, Berkeley, CA, 7 May 2007 - Video - October 15th, 2011 [October 15th, 2011]
- Genetic Engineering [Medical Ethics Series] - (excerpt) - Video - October 15th, 2011 [October 15th, 2011]
- Genetic Engineering and Society, Lecture 1b, Honors Collegium 70A, UCLA - Video - October 24th, 2011 [October 24th, 2011]
- Genomics: genetic modification (genetic engineering) and the human gene project - Video - October 26th, 2011 [October 26th, 2011]
- Genetically Engineering Intelligent Babies - Horizon: Are We Still Evolving? Preview - BBC Two - Video - October 27th, 2011 [October 27th, 2011]
- "GENETIC ENGINEERING" GERMAN REGIME feat THIRSTIN HOWL THE3RD - Video - October 28th, 2011 [October 28th, 2011]
- Science 360: Genetic Engineering - Video - October 31st, 2011 [October 31st, 2011]
- UFOTV Presents... - Bad Seed: Danger of Genetically Modified Food - Video - November 8th, 2011 [November 8th, 2011]