A cure for deafness may be possible. But should we cure it? / Humans + Tech - #48
A cure for deafness may be possible. But should we cure it? / Humans + Tech - #48
+ In isolating times, can Robo-pets provide comfort? + Diverse data sets don't solve facial recognition bias
Hi,
Sometimes I get lucky and come across an article that gives me a perspective I never would have considered on my own. This week I came across the article – “The End of Deafness” – that did just that. Read on below.
The End of Deafness
In last week’s newsletter, I linked to an article about Russian scientist, Denis Rebrikov, who wants to use CRISPR to cure congenital deafness by editing the genes of an embryo so that a baby born to deaf parents can be born with its sense of hearing intact.
In this article, “The End of Deafness” [Future Human], Emily Mullin delves into many other treatments being researched to cure deafness such as base editing, cochlear implants, and other methods. She also raises the issue that not everyone thinks deafness needs to be ‘cured.’ That is what really caught my attention because it was something I had never considered. Who would not want to hear again (or for the first time?)
But after reading the article, I realized how it’s a perspective that is entirely valid and that I need to broaden my perspectives instead.
Many deaf people don’t view their deafness as a disease or even a disability but as a cultural identity. In the Deaf community, some feel cochlear implants are an affront to that culture. Genetic treatments raise new concerns since they involve changing a person’s genetic makeup.
[…]
Researchers working on genetic treatments for deafness insist that they want to provide families and individuals with more choices, not eradicate deafness. “We want to provide options,” Holt says. “It’s really going to be up to the patients to decide whether they want to pursue those and embrace these potential therapeutics. It’s not anything we would ever want to push on anyone.” For deafness that comes on later in life, older children and young adults may also be presented with the choice of whether to change their genes.
But what if all those individual choices lead to fewer and fewer deaf people? What kind of society do we become when we eliminate people with a disability?
[…]
For many people, the idea of ending deafness brings to mind eugenics, a movement that emerged in the late 19th century that sought to improve humanity by breeding out disabilities and other undesirable traits. In Nazi Germany, deaf people were sterilized or sometimes killed. In the United States, deaf people were initially listed as targets of sterilization but were ultimately spared from state eugenics efforts.
“Such use of genetic technology is a form of genocide and shifts humanity towards the creation of master peoples, which was the goal of Nazi Germany during World War II,” says Howard Rosenblum, CEO of the National Association for the Deaf, a Maryland-based nonprofit that advocates for deaf rights. “The world needs to embrace deaf people for who they are instead of trying to fix and cure us.”
For those of us who have all our senses intact, we take them for granted. It’s hard for us to put ourselves in the shoes of the disabled and one of our first instincts to find a solution is to try and find a cure.
After reading this article and the perspectives of people who are deaf and would rather not be ‘cured,’ I started to wonder if the cure is more important for us (those with all senses intact) to make our lives easier.
Even with mandatory laws in many countries to provide alternatives for people with disabilities, most accessibility features are an afterthought and the needs of the disabled are not catered for enough. We need to work on thinking of them equally and providing a better experience for them.
As a human race, people with disabilities teach us what humans are really capable of with additional constraints. It has been observed that people with one sensory disability have their other senses heightened. Earlier it was thought that those with disabilities learn to use their other senses better, but new studies are showing that the brain rewires itself instead [Scientific American].
A new study provides evidence of this rewiring in the brains of deaf people. The study, published in The Journal of Neuroscience, shows people who are born deaf use areas of the brain typically devoted to processing sound to instead process touch and vision. Perhaps more interestingly, the researchers found this neural reorganization affects how deaf individuals perceive sensory stimuli, making them susceptible to a perceptual illusion that hearing people do not experience.
These new findings are part of the growing research on neuroplasticity, the ability of our brains to change with experience. A large body of evidence shows when the brain is deprived of input in one sensory modality, it is capable of reorganizing itself to support and augment other senses, a phenomenon known as cross-modal neuroplasticity.
In many ways, people with disabilities are teaching us more about what it really means to be human.
We often learn other languages to communicate with people from other cultures or countries or even as a hobby. Why don’t more of us make an effort to learn sign language or braille unless it’s out of necessity?
I’m definitely going to make more of an effort to consider the needs of people with disabilities in my work and daily life until it becomes a habit. I urge you to do the same.
PS: As a web developer, I know that adding alt text for images is important for blind people, and the image above does not have it. It’s because I couldn’t find a way in Substack’s editor to add it. I’ll get in touch with them to make sure I’m not missing anything and if not, I’ll request them to add the functionality.
In isolating times, can Robo-pets provide comfort?
Automated animals are providing comfort and reducing loneliness and mental well-being in seniors, especially during the pandemic [The New York Times].
Loneliness and social disconnection were already problems amongst seniors before the pandemic. The coronavirus has only exacerbated these issues for seniors living in facilities as well as those living alone in their homes.
A Japanese company began distributing an animatronic baby seal called PARO in 2009.
Researchers have reported benefits from interacting with PARO, although the studies were often small and short-term. At facilities in Texas and Kansas, for instance, investigators followed 61 residents with dementia who had 20-minute group sessions with a PARO three days a week for three months. Their stress and anxiety decreased, the researchers found, and they needed less medication for pain and problem behaviors.
Front Porch, a nonprofit senior living provider, acquired several PAROs in 2015 and tracked their effects through about 900 surveys reporting residents’ interactions. Over six months, the staff reported that the robots — which acquired names and, at holidays, festive outfits — helped calm residents, increased their social behavior and improved mood and appetite.
PAROs are expensive at $6,150 per unit. However, companies like Ageless Innovation, a spinoff of Hasbro, has developed robot pets under their Joy for All brand for about $120.
One of the largest studies, underwritten by United HealthCare and AARP, distributed free Joy for All robots to 271 seniors living independently.
All the seniors suffered from loneliness, according to a screening questionnaire. At 30 and 60 days, “there was improvement in their mental well-being, in sense of purpose and optimism,” said Dr. Charlotte Yeh, chief medical officer of AARP’s business subsidiary and a study co-author. The study also found “a reduction in loneliness,” Dr. Yeh said, although the questionnaires showed that participants remained lonely.
Many health insurers in the US may soon cover the cost of these robot pets. Another advantage of these robot pets is that they don’t require the care that a real-life pet would need but are providing most of the benefits of having pets around.
There are some ethical considerations to think about though.
But Sherry Turkle, a psychologist at the Massachusetts Institute of Technology who has long studied how older people use technology, objected. “The promise is that it becomes a companion and you have a relationship with it,” she said of a robotic animal. “As though there’s mutuality. There’s not mutuality. It’s a bunch of bits and bytes.”
Sister Imelda Maurer, who, as a member of the Sisters of Divine Providence of San Antonio, has long been involved with elder care, dislikes the notion of deceiving people who have dementia and may think robots are actual pets. “There’s an element of ethical dishonesty about it,” she said.
Both she and Dr. Turkle pointed out that the enthusiasm for robots spotlighted the many failings in the way our society cares for older people, whether in understaffed facilities or isolated at home.
Study indicates neither algorithmic differences nor diverse data sets solve facial recognition bias
I’ve covered bias in AI-based facial recognition in many issues in the past. In most of those articles, it was suggested that the bias was because the models were trained on limited types of images that didn’t represent different races equally. According to a study by researchers at Wichita State University, even a diverse data set does not solve the issue of bias [VentureBeat].
Facial recognition models fail to recognize Black, Middle Eastern, and Latino people more often than those with lighter skin. That’s according to a study by researchers at Wichita State University, who benchmarked popular algorithms trained on datasets containing tens of thousands of facial images.
While the study has limitations in that it investigated models that haven’t been fine-tuned for facial recognition, it adds to a growing body of evidence that facial recognition is susceptible to bias. A paper last fall by University of Colorado, Boulder researchers demonstrated that AI from Amazon, Clarifai, Microsoft, and others maintained accuracy rates above 95% for cisgender men and women but misidentified trans men as women 38% of the time. Independent benchmarks of major vendors’ systems by the Gender Shades project and the National Institute of Standards and Technology (NIST) have demonstrated that facial recognition technology exhibits racial and gender bias and have suggested that current facial recognition programs can be wildly inaccurate, misclassifying people upwards of 96% of the time.
Quote of the week
“Such use of genetic technology is a form of genocide and shifts humanity towards the creation of master peoples, which was the goal of Nazi Germany during World War II. The world needs to embrace deaf people for who they are instead of trying to fix and cure us.”
—Howard Rosenblum, CEO of the National Association for the Deaf, in the article The End of Deafness [Future Human].
I wish you a brilliant day ahead :)
Neeraj