A Case Study on CRISPR-Cas9 and the Deaf community.
Discussion questions are available here.
It is now in the near future. Vivian and Colin have been happily married for three years. Colin is Deaf. Both Vivian and Colin are fluent in several languages and immersed in several cultures.
Vivian and Colin plan to have a baby soon so they visit a genetic counselor for screening because Vivian has concerns about her family genetic history. Ms. Oppenhain, the genetic counselor, conducts the screening and reports to the couple that it is likely that their baby will be born Deaf as Colin was. She then tells the couple about CRISPR-Cas9, a gene-editing technology. This technology allows geneticists and medical researchers to edit parts of the gene by removing, adding, or altering sections of the human DNA sequence. CRISPR-Cas9 can eliminate perceived disease-causing genes and can be used before or during the early stages of a pregnancy.(1) Ms. Oppenhain explains that this technology is so advanced that the medical community has successfully reduced the deaf population birthrate by 65%.
Vivian and Colin are uncomfortable about Ms. Oppenhain’s statement because they recognize that the elimination of Deaf people translates into an elimination of an important culture. They are particularly worried because Britain just passed its most recent update of the Human Fertilization and Embryology Act (HFEA), legislation that prohibits the implantation of embryos, or donation of genetic material for anyone deemed to have a genetic difference that will result in a serious medical condition. In the UK, the passage of this bill has resulted in disparity between the rights of Deaf peoples’ reproductive liberty, and their hearing peers. (2)
In the wake of HFEA, the U.S. government is now considering enacting a reproductive law that mandates individuals who have health insurance use CRISPR-Cas9 before they can give birth to a baby, either by a natural birth or in vitro fertilization (IVF), a medical procedure whereby an egg is fertilized by sperm in a test tube or elsewhere outside the body. If an individual considering having a baby does not want to use CRISPR-Cas9, his/her health insurance will be immediately revoked indefinitely, a policy or practice known as elective disability.(3) All medical expenses will be paid out of the individual’s pocket indefinitely. Ms. Oppenhain explained that the national government believes that parents have a moral duty to ensure they have the healthiest babies possible to prevent the child from suffering and avoid burdening society. The national government reasoning concludes that if parents do not want to uphold their duty of producing the healthiest babies, insurance companies and American taxpayers should not be obligated to fiscally support these responsibility-shirking parents.
Vivian and Colin are worried because their fluency in several languages and ties to several cultures translate into a perspective that there exists a need to preserve a linguistic minority.(4) After leaving Ms. Oppenhain’s office, they contact their Deaf cousin, Amelia to share their concerns about the circulating bill.
Amelia shares that she has been working with the National Association for the Deaf (NAD) to block the bill. Vivian and Colin learn that NAD is lobbying for a law that assures the U.S. government recognizes and accepts a duty to recognize and ensure Deaf people have the right to only continue exist, but also flourish.
In its proposal, the NAD draws on the reasoning and precedent set out by the United Nations Declaration on the Rights of Indigenous People (UNDRIP), asserting that Deaf communities are indigenous to their home countries and pose all the hallmarks of an indigenous community. Deaf communities, like indigenous people, are defined by “historical continuity, distinctiveness, non-dominance...” and possess a “determination to preserve, develop and transmit to future generations…” and their identities “as peoples in accordance with their own cultural patterns, social institutions.”(5) NAD points out that the very first right acknowledged by the UNDRIP is that of self-determination. If denied the reproductive liberty to ensure Deaf births by parents who wish to bear Deaf children, Deaf people are certain to dwindle to numbers far too low to create any continuity of culture and language across generations. Thus, Deaf people are entitled to additional legal protection and rights akin to those of indigenous people.(6)
The NAD further argues that legislation should ensure the government will subsidize free and unfettered access for Deaf people to utilize all available technologies to safely ensure Deaf progeny, as it is likely that the average hearing parental selection would result in few/no Deaf children being born.
This bill will legally ensure Deaf people are entitled to free and unlimited access CRISPR-Cas9 and any related genetic technologies to ensure Deaf births.
*Note: The capital ‘D’ in “Deaf” has a historical reference to a distinct socio-cultural/linguistic identity, whereas a lowercase ‘d’ generally refers to a pathological perspective of an auditorial deficiency.
(1) “What is CRISPR-Cas9?” (2016).
(2) Bryan and Emery (2014). Information in the article is reflective of the 2008 HFE bill.
(3) See Tucker (1998) for the further explanation on elective disability.
(4) For an article explaining the need for preserving Deaf culture, see Dolnick (1993).
(5) “Indigenous Peoples” (2013).
(6) “Self-determination” (2006). The website includes a list of self-determination related articles that gives a more member specific perspective on the issue.
Bryan, Allsion and Steve Emery, “The Case for Deaf Legal Theory through the Lens of Deaf Gain” In Deaf Gain, edited by H-Dirksen L. Bauman and Joseph J. Murray, 37-62. Minneapolis: University of Minnesota Press, 2014. Accessed April 20, 2017. https://muse.jhu.edu/book/35686.
Dolnick, Edward. "Deafness as Culture." The Atlantic 272, no. 3 (1993): 37-53.
Indigenous Peoples and the United Nations Human Rights System, “Fact Sheet No. 9/Rev.2”. United Nations Human Rights Office of the High Commissioner. United Nations: New York and Geneva, 2013, pg. 2-3. http://www.ohchr.org/Documents/Publications/fs9Rev.2.pdf (accessed April 18, 2017).
Tucker, Bonnie P. "Deaf Culture, Cochlear Implants, and Elective Disability." The Hastings Center Report 28, no. 4 (1998): 6-14.
Unrepresented Nations and Peoples Organization. “Self-determination.” Last modified July 19, 2006. http://www.unpo.org/article/4957.
Yourgenome. “What Is CRISPR-Cas9?” Last modified December 19, 2016. http://www.yourgenome.org/facts/what-is-crispr-cas9.
Transcript of the video
Video Description: The video opens with two people standing in front of a blue background, at left is a tall White male, short sleeved dark shirt, close cropped hair at the sides longer on top, with a mustache and goatee. At right a shorter Black woman stands, hair natural and in twists parted in the middle to either side, she is wearing a black top and glasses. All dialogue below is translated from ASL.
CP: Hello all, I’m Chaynna Powell
MM: I’m Marvin Miller
CP: We are part of a Bioethics and the Deaf Community course.
MM: In that course, we have had robust discussion and vibrant debate that lead to the creation of this Case Study and discussion question for your consideration.
CP: In the near future, Vivian and Colin have been happily married for two years. Colin is Deaf. Both are immersed in multiple cultures and languages.
MM: Our happy couple is excited about planning to having a baby. Vivian, because of concerns about her family history, decides that they should seek genetic counseling. They go to meet with a genetic counselor named Dr. Oppenhain. During the genetic counseling session, Dr. Oppenhain cautions them that there is a likelihood that their child will be born Deaf. He quickly reassures them that with a new technology known as CRISPR-CAS9 Gene Editing, it’s a simple affair to fix defective genes that cause serious illness or disability and insure a “good” baby. He adds that these techniques are available prior to pregnancy, or in utero. He lauds the success of these techniques in reducing the numbers of Deaf births by 65%.
CP: Vivian and Colin were left unsettled and disturbed by the counseling session with the doctor. They saw that this could threaten the elimination of Deaf people and their languages and cultures. They were even more concerned because of the passage of a law in the UK, the Human Fertilization and Embryology Act (HFEA). That law prohibited the implantation of any embryo known to have defect of illness or disability for a pregnancy. This meant that Hearing parents had the freedom to intentionally select offspring like themselves, but Deaf people could not, which disadvantages Deaf people.
MM:The passage of the UK law prompted the creation and introduction of a Health Insurance bill here in the US requiring all prospective parents, whether planned pregnancy or not, whether using in vitro fertilization or not, to make use of CRISPR-CAS9 techniques to edit the offspring’s genes to be free of defect. It also states that if parents should choose to bring to term a child that does have a disability, insurers will not be liable for any associated costs throughout the life of the offspring. The parents will be responsible for all costs out of pocket. The choice to bear children that Do have disability is referred to as elective disability.
The genetic counselor explains to the couple that the government believes its citizens have a duty, an obligation to bear children that are healthy and fit, and that people with disabilities are unfairly burdensome on government, and insurers.
CP: Both are struck by this news, and considering the high value they place on many cultures and languages and their preservation, they leave with heavy hearts. Soon after, they contact Colin’s Deaf cousin Amelia. Amelia tells them that she knows about this and she is working with the National Association of the Deaf (the NAD) to stop the passage of that bill. She tells them about NAD’s work on a counter measure, a bill that would affirm the rights of Deaf people to preserve their population… to grow and flourish.
MM: This bill, supported by NAD, cites the United Nations Declaration on the Rights of Indigenous People. That declaration defines indigenous people as having the following characteristics.
First, that they have a historical continuity across generations. Secondly, that they are a distinct population. And third, that they are not a dominant colonizer of their land. Lastly, that they possess a determination to preserve, develop and transmit to future generations their identities “as peoples in accordance with their own cultural patterns, social institutions.”
The NAD, recognizing these shared characteristics with Deaf Communities, then drafted this bill.
The NAD points out that the very first of the Rights of Indigenous Peoples recognized by the UN Declaration is Autonomy. This right of self-determination is critical, if Deaf parents’ desire to have Deaf offspring is impeded; if they are denied that reproductive liberty, then the Deaf community is fated to dwindle to extinction and their languages and cultures will not be able to be passed on to future generations.
This law asserts the need for enhanced protections to ensure the right to the preservation and flourishing of Deaf People and their communities.
CP: The NAD proposes that government should ensure Deaf people be given free access to technologies that would ensure Deaf births to Deaf parents. They reason that Hearing parents desire for Hearing children will result in diminishing numbers of Deaf people until none exist. Deaf people must be allowed the autonomy to select Deaf offspring and ensure the continuation of Deaf people across generations.
MM: This bill would ensure that the Deaf community can access CRISPR gene editing technology to ensure the continuation and growth of their numbers.
"Gene Therapy -- A Threat to the Deaf Community?" Teresa Blankmeyer Burke. Impact Ethics. Eds. Françoise Baylis and Angel Petropanagos. Novel Tech Ethics, Dalhousie University School of Medicine. March 2, 2017.
https://www.dailymoth.com/single-post/2017/03/15/Will-Genetic-Therapy-Cause-An-End-to-the-Deaf-Community (ASL Summary on Daily Moth website)