Reproductive Technology: How Far Do We Go?Resources to Learn More

CRISPR Gene-Editing and Disabilities

Nobel Presenters: Jacob Corn, University of California, Berkeley; Marsha Saxton, World Institute on Disability

Overview of the Topic
While humans have practice selective breeding of plants and animals for millennia, the development of the CRISPR-Cas9 gene-editing technique has given scientists a potent new tool with which to edit genes by removing and inserting DNA segments with a high degree of accuracy and specificity. Researchers have been able to modify the Cas9 protein to recognize specific genes within a strand of DNA and remove and replace them. CRISPR has the potential to provide treatment options for nearly all genetically-based diseases. Jennifer Doudna and Emmanuelle Charpentier are the researchers credited with the application of the CRISPR-Cas9 technique for use in genome editing.

When compared to earlier methods of modifying genetic material, CRISPR is relatively easy to program, and the accessibility of the CRISPR system has allowed researchers around the world to take advantage of its potential. This accessibility, combined with the tool’s powerful capacity to permanently alter human genetic material, create opportunities for misuse and abuse, and give rise to a host of ethical questions and concerns. They begin with the question of what constitutes a genetic disability as opposed to an ordinary condition of human being. Deafness, for instance, is described as a disability by some; however members of the Deaf community describe it as a culture. Treating it as a disability and using gene editing to eliminate it would effectively destroy this community. Disability advocates also point out the disparity between the considerable resources that have been devoted to the development of this tool, and the modest resources expended in creating reasonable accommodations for disabled persons.

Another set of concerns arises as a result of the fear that modifications of the human genome could lead to a reduction of diversity, as a result of the fact that only a small set of genes will be favored. A future world filled with “designer babies” would eliminate the human genetic diversity that has been built over millions of years.

In February of 2017, an advisory committee of the National Academy of Sciences and the National Academy of Medicine gave the “yellow light” to endorse the use of CRISPR to address “serious diseases and disability” in cases where there is no other alternative. Because of the ethical challenges CRISPR presents, Doudna advocated a worldwide pause on all use of this gene editing tool, until ethical standards are established. Jacob Corn has written thoughtfully on limiting the use of CRISPR/Cas9 in the human germline until we can better delineate safe and ethical parameters for its use. The development of such standards calls for the combined efforts of scientists, disabled individuals and disability advocates, and ethicists.

Questions to Consider

Who should have the authority to create and enforce regulations for the use of CRISPR-Cas9 system within the scientific community?
CRISPR technology allows for the potential of changing genetic traits that alter physical appearance in addition to curing disease. How do scientists determine which genes should be affected?
Despite its precision as a tool, errors still occur with the use of CRISPR. What conditions must be met before conducting trials on humans?
Humans have long altered the genome of other organisms by selecting preferred individuals to reproduce, inducing random mutations with radiation, and injecting DNA segments into cells. How do the ethical implications of CRISPR differ from those associated with these technologies?

Resources Recommended by Nobel Speaker Marsha Saxton

The list below is excerpted from a longer list of resources provided by Saxton, including some not available electronically.
Find that entire list here.

Anti-Choice Legislators Try to Force Wedge Between Reproductive, Disability Rights Activists (Rewire)

My Son Has Down Syndrome (Washington Post)

Outlawing Abortion Won’t Help Children With Down Syndrome (New York Times)

The Rhetorical Two-Step: Steven Pinker, CRISR, and Disability (Biopolitical Times)

Should Women Be Able to Abort a Fetus, Just Because It’s Female? (The Atlantic)

The Unnecessary Opposition of Rights (Generations Ahead)

Resources Recommended by Nobel Speaker Charis Thompson

Good Science: The Ethical Choreography of Stem Cell Research

Global IVF, USA: Between Rock and a Marketplace

Classroom Case Study

The National Center for Case Study Teaching in Science has created this lesson plan to help young scientists understand contemporary scientific research and issues. The lesson is designed to engage high school or college students with the CRISPR Cas9 system for genome editing. Students read four interrelated case studies about different members of a single family. One of these individuals is a woman who hopes to conceive a child and meets with a genetic counselor after learning that she is a carrier for Duchenne Muscular Dystrophy (DMD). As students read through each case study, they explore supplemental activities that introduces them to how CRISPR gene editing works. Supplemental readings are scaffolded so that students examine increasingly complex resources with each case.

Works Consulted and Resources for Further Reading

5 Reasons Why We Need People with Disabilities in the CRISPR Debates. (Biopolitical Times) (4 pp.)
Emily Beitiks outlines the importance of including the disabled community in discussions of the use of CRISPR to eliminate genetically-based diseases. She outlines several reasons disabled individuals are presently excluded from the debate.

Don’t Edit the Human Germ Line (Nature) (6 pp.)
The authors warn that risks are serious and therapeutic benefits tenuous with heritable human genetic modification.

Gene Editing of Human Embryos Yields Early Results (Science News) (6 pp.)
A discussion of research using embryos that has been conducted in China and in Texas. Includes an approachable elementary description of the CRISPR-Cas9 technology.

How CRISPR Lets Us Edit Our DNA | Jennifer Doudna (TED Talk)
Jennifer Doudna discovered the biological mechanism that led to the invention of CRISPR. In her 2015 TED Talk she addresses the need for a global pause on all research, until the ethical implications of the new technology can be addressed.

Human Enhancement: Scientific and Ethical Dimensions” (Pew Research Center) (16 pp.)
This article outlines the ethical challenges society faces when considering human enhancement. The author acknowledges the ability humans now have to alter their genome through CRISPR technology and considers the ethical implications of this possibility for contemporary society.

Human Genome Editing: Science, Ethics and Governance (National Academies Press) (277 pp.)
The 2017 report, compiled with collaboration from a host of National Academies of Science, Medicine and Engineering committees, “proposes criteria for heritable germline editing, provides conclusions on the crucial need for public education and engagement, and presents 7 general principles for the governance of human genome editing.”

Human Gene Editing Receives Science Panel’s Support

Nuffield Council Report on Genome Editing

What Can You Actually Do With Your Fancy Gene-Editing Technology? (Atlantic) (7 pp.)

What You Need to Know about CRISPR | Ellen Jorgensen (TED Talk)
Ellen Jorgensen is a molecular and synthetic biologist and the Executive Director of Genspace. In her 2016 TED Talk she addresses the potential challenges of the system that prevent it from being as easy, cheap, and accessible.