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Nobel laureate David Baltimore of CalTech speaks to reporters at a 2015 summit on the safety and ethics of human gene-editing. (AP Photo/Susan Walsh)

Why ‘ability expectations’ must be central to debates on science and our future

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 certain abilities, and individuals enjoying these advantages are unwilling to give up these advantages;

  2. “Ability-expectation oppression,” meaning one is oppressed by the ability expectations of others;

  3. Ability security,” meaning that one has a chance for a decent life independent of their abilities;

  4. “Ability discrimination,” meaning that one is oppressed because their ability is different, and

  5. Ability-expectation creep,” meaning that we seem to constantly expect more abilities.

Negotiating differing ability expectations

Last year’s U.S. election and the U.K.‘s Brexit are two events that highlighted the obvious differences in ability expectations among groups of people.

Anti-Brexit protesters march in London in July urging a return to the European Union. Brexit was an example of people divided along ‘ability expectation’ lines. (Shutterstock)

In Great Britain, younger voters clearly saw benefits to staying in the European Union that were in line with their ability expectations; older voters felt leaving would enhance theirs.

In the U.S., voters in rural areas and manufacturing-based regions felt they were being left behind economically by technological advances and efforts to combat climate change; voters in urban and non-manufacturing areas felt differently.

It all underscores that if no serious discussions —involving all of us — take place about ability expectations in the debate over gene-editing and other scientific advancements, we will see further fragmentation that will disable all of us.

A recent Pew Research survey on human enhancement revealed that an increase in the ability to be productive at work was seen as a positive. What does such ability expectation mean for the “us” in an era of scientific advancements in gene-editing, human enhancement and robotics?

Which abilities are seen as more important than others?

The ability expectations among “us” will determine how gene-editing and other scientific advances will be used.

And so how we govern ability expectations, and who influences that governance, will shape the future. Therefore, it’s essential that ability governance and ability literacy play a major role in shaping all advancements in science and technology.

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