This article was originally published on The Conversation, an independent and nonprofit source of news, analysis and commentary from academic experts. Disclosure information is available on the original site.
Author: Gregor Wolbring, Associate Professor, Cumming School of Medicine,
This article was originally published on The Conversation, an independent and nonprofit source of news, analysis and commentary from academic experts. Disclosure information is available on the original site.
Author: Gregor Wolbring, Associate Professor, Cumming School of Medicine, University of Calgary
Gene-editing is in the news again, this time with headlines about a study that reported how scientists can alter viable embryos genes.
The gene-editing development is a reminder that we need to have a societal discussion about what I call “ability expectations.” Ability-expectation literacy and governance can influence in a negative and positive way how society is impacted by gene-editing and other scientific advancements.
I am a science and technology studies and ability studies scholar. I believe ability expectations are at the root of many societal problems. Ability expectations shape nearly every aspect of society, and therefore it’s beneficial to look at societal developments, including scientific advances, through an ability expectation lens.
Ability expectations have many parts. They include the skills that you expect of yourself, and that others expect of you. They involve the capability to live out certain values and beliefs, and the capacity to have a good life. Two examples are expectations of an active citizen and what’s known as the capability approach).
“Ability expectation literacy” means people understand the consequences of ability expectations. “Ability expectation governance” focuses on how to navigate the societal aspects of ability expectations.
The recent gene-editing news has focused on human germline interventions (modification of genes that changes the genes of future children) and curing diseases.
Who is ‘us?’
But the envisioned scope of gene-editing also applies to the somatic level (modifications that are not transmitted to the next generation.) And it’s not limited to curing diseases — it also includes enhancing humans.
Because gene-editing discussions go beyond the elimination of diseases, any ability expectation that is linked to genes could shape the scope of gene-editing — and so must be part of the debate.
Francoise Baylis, an eminent Canadian ethicist, closes her gene-editing analysis for The Conversation Canada with a valid demand that there must be wide societal consultations around germline modification.
“Nothing about us without us!” she writes.
But who is “us?” I have argued elsewhere that the public is seen as a passive recipient of wisdom from experts (people involved in the natural science of gene-editing). Furthermore, some groups — such as disabled people, who do not focus on cures but on how society treats them — feel they’re not part of the “us.” And there are other voices missing.
The answer to the question “who is us?” has to be all of us. So how do we collectively discuss the issues raised by gene-editing, and for that matter other scientific and technological advancements? How do we discuss the differences in ability expectations among “us?”
Do people consider ethics?
The recent news stories call for a focus on the ethical, moral and legal issues raised by gene-editing.
But if all of “us” are to be truly involved in that discussion, ethical, legal and moral considerations may not always be the best way to grapple with it. Those considerations might not connect with the “us,” the people. People don’t necessarily make legal arguments or use ethical theories to make their case. Another respected Canadian ethicist, Susan Sherwin, has stated: “(Ethicists) lack the appropriate intellectual tools for promoting deep moral change in our society.” Even if people do point to ethical concerns, different ethics theories can be used to justify different opinions.
I believe that bringing ability expectations into the debate is useful, because everyone has them. They connect all of us to science and its consequences. Therefore, we should aim for a high level of understanding of the consequences of ability expectations and their connection to gene-editing and other scientific advancements.
We also need to navigate the societal aspects of ability expectations, because ability expectations both influence and are influenced by scientific developments.
The impact of ability expectations
Ability expectations define the relationship between humans, animals and nature.
Ability expectations have been and still are used to disable, or disempower, many people, not only people seen as impaired. They’ve been used to disable or marginalize women (men making the argument that rationality is an important ability and women don’t have it). They also have been used to disable and disempower certain ethnic groups (one ethnic group argues they’re smarter than another ethnic group) and others.
How we debate gene-editing and other scientific advancements is both influenced by and influences various aspects of ability expectations:
1. The societal realities of “ability privilege,” meaning that one has certain advantages if exhibiting cert