| This is an article of the special issue on germline editing of GID, the magazine of coalition member Gen-ethisches Netzwerk (Germany). Interview of Prof. Dr. Gregor Wolbring by Dr. Isabelle Bartram (GeN) |
A disability rights perspective on human genome editing
In various reports and recommendations, ethics and scientific bodies promote a problematic image of disability as something worth avoiding. Even critics of germline interventions are often unable to free themselves from this ableist perspective.
Dr. Wolbring, you are a professor for Disability Studies, what does that mean for people who have not yet heard of it?
I use Disability Studies, but also Ability Studies, as an analystical framework in the various fields of research in which I work. Disability studies, in a nutshell, is the critique of the social reality of people who are treated in a disabling way because they don’t fit the prevailing ability norms. Ability studies is about who promotes and can decide which abilities are important. Ableism is often used as a shorthand term for discrimination against disabled people. I see ableism as a general social reality in which all people are judged on the basis of their abilities. The people and social groups in positions of power can then decide which abilities are important and which are not. Genetics naturally constantly plays a role in this, as genes are often discursively linked to abilities.
What is the difference between the medical and social model of disability?
The German word “Behinderung” – just like the English word “disability” – is used for very different things. On the one hand to describe a body, and on the other hand to describe what disables a person.
When you look at the body, you have two options: You can describe the body as deficient or as a variation within human diversity. When dealing with what disables a person, you have three options: You can identify the body or society or both as the cause of the disablement. Viewing the body as deficient and as the cause of the disablement is the traditional medical model – from this perspective, the main solutions are elimination or treatment.
As a second option, you can also say that my body is deficient, but I am also socially disabled and demand that this social disablement ends. Just because you perceive your body as deficient doesn’t mean that you don’t experience social discrimination. This is a fusion of the medical model of the body and the social model of disability.
Thirdly, you have deaf culture, the neurodiverse community1 and others who do not see their body as deficient and therefore do not see the body as the cause of their disablement, but only the social structure. This is the social model of the body and the social model of disability.
Many people use the word disability without defining it precisely, so that it remains unclear exactly what they mean.
This issue of GID focuses on germline interventions – what would a Disability or Ability Studies perspective on the topic look like?
Disability Studies would examine how the need is justified and ask why we are jumping to “fix”. According to Disability Studies, the genome editing discourse has the same problems as the genetic testing debate, although the modes of intervention in genome editing are more diverse: at the somatic level2 , in the germline, prenatally or after birth.
Genome editing allows not only the modification of genes associated with so-called diseases, but also of genes that lead to somatic and heritable enhancement beyond the norm – i.e. “the enhancement” of traits beyond the species-typical. The ‘safer’ genome editing is considered to be, the more genes that are not associated with disease will be targeted – a goal that transhumanists are clearly pushing for. Thus, people who are considered to be ill will be treated first and if no major problems arise there, then other traits will also be tackled. Here, disability studies ask what the social consequences of enhancement would be for the untreated disabled. Ability studies ask who is pushing which enhancements towards a new ability norm and why.
Since you mentioned enhancement – in reports by ethics committees and science bodies, a distinction is always made between therapy and enhancement. What do you think about this differentiation?
This distinction has been questioned for a long time, even outside of genome editing. In 2013, we conducted a survey with people from the deaf culture and asked them whether they would prefer a cochlear implant that gives them average hearing or an implant that goes beyond normal hearing. Most respondents answered that they would choose an implant that gives them above average hearing if they are forced to change, because they are not accepted as they are and their ability differences lead to many social disablements. I think the preference for enhancements applies to most people. It will be the same with genome editing once it is considered ‘safe’. Ultimately, the concept of illness will change and many “normal” people will be labeled as ill if they cannot keep up with people with enhancements.
What are your thoughts on how people with disabilities are currently portrayed in the debate on human genome editing?
They are portrayed within the medical model of body and disability/disablement, otherwise you can’t promote genome editing. At the moment, germline interventions are portrayed in the debate as something bad, but somatic gene therapy and other interventions such as genetic testing are unfortunately often portrayed as okay, as ‘safe’. From a disability studies perspective, I think disabled people are thrown under the bus when the argument is made on the level of safety. Because many “safe” methods are seen as problematic by many disabled people.3
Let me give you another example of a controversial method: In Alberta, disabled people were not gassed as in Germany in the time of World War II, but many were sterilized. In 1996, Leilani Muir sued the Alberta government as a person affected. In the lawsuit, the Eugenics Commission’s decision at the time was defended by the argument that “some causes of learning disabilities were hereditary and that at the time the Commission was established, there was a risk of passing them on because the choice of contraceptives was limited. Today, people have the pill and other contraceptives, they can get genetic counseling and have an abortion before a disabled child is born.” This is not about safety, but again the argument is that they should have used this method because the others did not exist. In both cases, the idea behind it is “disabled people must be prevented”.4
So, you wouldn’t make this distinction between somatic genome editing and germline modifications?
People argue that germline interventions have consequences for society that we cannot foresee. If something goes wrong with somatic gene therapy, it would only affect one person; if something goes wrong with germline modifications, it would have consequences for many more people. This is a safety debate and, for me, a red herring. Because the risk-benefit assessment totally depends on how widespread an intervention is – the more it is used, the more people see it as safe and the more it is then used. The more an application is seen as technically unproblematic, the more it will be used. If somatic gene therapies are carried out without negative consequences, germline interventions will follow.
At the moment, somatic gene therapies are a major intervention, like a stem cell transplantation, so that they are only considered in very rare cases. Do you think it will be developed to be just like an injection at some point?
Whether somatic interventions become consumer goods depends on how successful the previous interventions are, which are limited to certain diseases, and whether there are traits apart from diseases that are desirable and linked to genetics. I think with regard to the enhancement of abilities, non-genetic possibilities will be exhausted first, as only for a few enhancements there are clear genetic targets.
Which enhancements you want depends on the level of advantage they bring. If you get a better job because you gain certain abilities, for example because you have sensors that give you certain abilities, many people who can afford it will use the sensors. We constantly expect people to change their skills. For example, in Canada you now have to have a smartphone and be able to use it. It is mandatory to verify accounts for many applications. And many of the apps you need are only available on smartphones and not on computers. Thus, we expect more and more and also different skills, I call this Ability Expectation Creep.
There are many things that people have to adapt to if they want to continue to participate in society. This will also happen with enhancement if it is seen as safe and cheap and is widespread enough – it’s just a question of time.
Only very few people with disabilities participate on all these committees. For example, there was one person with cystic fibrosis on the German Ethics Council who took part in the discussions, but otherwise all other members are able-bodied – at least publicly. Why is that?
I think that, on the one hand, it’s a capacity problem. We haven’t yet solved previous issues like access and new problems keep cropping up. People can’t be experts in everything. Genetics, access, enhancement and now artificial intelligence as the latest aspect. Thus, priorities are set as to which issues you can influence. For example, when legislation against genetic discrimination was being discussed in North America, the only stakeholders who took part were the patient groups. They wanted an anti-discrimination law against discrimination by health insurance companies, for example. But that doesn’t protect you from being eliminated before you show symptoms – that’s not part of the laws against genetic discrimination, it’s just about making sure you’re not discriminated against in the workplace or by insurance companies. The debates on genetic testing have been going on for so many years, and the disability rights arguments have been ignored or rejected for so long, that now nearly no disability rights group in North America is working on the issue.
How could the capacity of people from the disability rights movement be increased to participate in debates and decision-making processes?
First, the drivers of activist burnout, like those that have been described for disabled climate activists, need to be addressed: Stressors that deteriorate activists’ physical or emotional health and affect their sense of connection to the movement and their ability to stay engaged. Worse, burnout begets burnout: when movement work is taken on by fewer people, they begin to burn out, engage less effectively and take out their hopelessness on other activists.
Relevant factors can include unreasonable expectations placed on disabled activists, too much workload, working on issues around identity, sexism, racism and other additional forms of discrimination, the life situation of disabled people outside of activism and how activists are treated in organizations.5 A part of burnout is not even daring to be who you are: autistic burnout, for example, is triggered by the stress of “masking”, or suppressing autistic behaviors, that comes with living in a non-inclusive neurotypical world.5
Most disabled people live very precariously. And if we always say “and with disabled people”, then it’s not that simple. Disabled people have to be in a life situation where they have the space to engage with the issues and learn enough on the topic so that they can challenge the system. How can you do that if you’re poor and cannot access transportation and venues where the discussions take place and you don’t have a job – that means you get a few privileged people like me who often appear somewhere.
Then there’s the hierarchy between social movements, where the disability rights movement is often at the bottom. In relation to the debate on genome editing – why should the disability rights movement support moves in the gene editing discussions that only oppose germline interventions today and accept when methods such as pre-implantation genetic diagnosis or non-invasive prenatal tests, which are also problematic from a disability rights perspective, are presented as justifiable alternatives or are not even discussed in the gene editing discussions? Disability rights groups have questioned many genetic technologies and their aims over the years – unfortunately with little success. Why should disability rights groups get involved if only germline interventions are being questioned when there are so many issues that make life difficult for disabled people today?
Thank you very much for the interview!
- The concept of neurodiversity views neurobiological differences as a human disposition among others and rejects a pathological perspective on characteristics of people i.e. on the autistic spectrum or with attention deficit/hyperactivity disorder (ADHD)
- In somatic genome editing, individual cells of an existing person are changed and the change is not passed on to the next generation.
- Wolbring, G./Diep, L. (2016): The Discussions around Precision Genetic Engineering: Role of and Impact on Disabled People. In: Laws, 5, 3, www.doi.org/10.3390/laws5030037
- Thomas, D. (29.06.1995): Geneticist defends sterilization in era before the pill. In: Calgary Herald.
- Wolbring, G./Lillywhite, A. (2023): Burnout through the Lenses of Equity/Equality, Diversity and Inclusion and Disabled People: A Scoping Review. In: Societies, 13, www.doi.org/10.3390/soc13050131.
Interview with Prof. Dr. Gregor Wolbring, since 2008 Professor for Disability Studies at the University of Calgary. He conducts research in the fields of Science and Technology Governance, Sustainability Studies, Disability Studies, Ability Studies, and Sport. Dr. Isabelle Bartram conducted the interview.