How Will Brain-Computer Interfaces Change Our Lives?
Kira Peikoff was the editor-in-chief of Leaps.org from 2017 to 2021. As a journalist, her work has appeared in The New York Times, Newsweek, Nautilus, Popular Mechanics, The New York Academy of Sciences, and other outlets. She is also the author of four suspense novels that explore controversial issues arising from scientific innovation: Living Proof, No Time to Die, Die Again Tomorrow, and Mother Knows Best. Peikoff holds a B.A. in Journalism from New York University and an M.S. in Bioethics from Columbia University. She lives in New Jersey with her husband and two young sons. Follow her on Twitter @KiraPeikoff.
This Mom Donated Her Lost Baby’s Tissue to Research
The twin boys growing within her womb filled Sarah Gray with both awe and dread. The sonogram showed that one, Callum, seemed to be the healthy child she and husband Ross had long sought; the other, Thomas, had anencephaly, a fatal developmental disorder of the skull and brain that likely would limit his life to hours. The options were to carry the boys to term or terminate both.
The decision to donate Thomas' tissue to research comforted Sarah. It brought a sense of purpose and meaning to her son's anticipated few breaths.
Sarah learned that researchers prize tissue as essential to better understanding and eventually treating the rare disorder that afflicted her son. And that other tissue from the developing infant might prove useful for transplant or basic research.
Animal models have been useful in figuring out some of the basics of genetics and how the body responds to disease. But a mouse is not a man. The new tools of precision medicine that measure gene expression, proteins and metabolites – the various chemical products and signals that fluctuate in health and illness – are most relevant when studying human tissue directly rather than in animals.
The decision to donate Thomas' tissue to research comforted Sarah. It brought a sense of purpose and meaning to her son's anticipated few breaths.
Thomas Gray
(Photo credit: Mark Walpole)
Later Sarah would track down where some of the donated tissues had been sent and how they were being used. It was a rare initiative that just may spark a new kind of relationship between donor families and researchers who use human tissue.
Organ donation for transplant gets all the attention. That process is simple, direct, life saving, the stories are easy to understand and play out regularly in the media. Reimbursement fully covers costs.
Tissue donation for research is murkier. Seldom is there a direct one-to-one correlation between individual donation and discovery; often hundreds, sometimes thousands of samples are needed to tease out the basic mechanisms of a disease, even more to develop a treatment or cure. The research process can be agonizingly slow. And somebody has to pay for collecting, processing, and getting donations into the hands of appropriate researchers. That story rarely is told, so most people are not even aware it is possible, let alone vital to research.
Gray set out on a quest to follow where Thomas' tissue had gone and how it was being used to advance research and care.
The dichotomy between transplant and research became real for Sarah several months after the birth of her twins, and Thomas' brief life, at a meeting for families of transplant donors. Many of the participants had found closure to their grieving through contact with grateful recipients of a heart, liver, or kidney who had gained a new lease on life. But there was no similar process for those who donated for research. Sarah felt a bit, well, jealous. She wanted that type of connection too.
Gray set out on a quest to follow where Thomas' tissue had gone and how it was being used to advance research and care. Those encounters were as novel for the researchers as they were for Sarah. The experience turned her into an advocate for public education and financial and operational changes to put tissue donation for research on par with donations for transplant.
Thomas' retina had been collected and processed by the National Disease Research Interchange (NDRI), a nonprofit that performs such services for researchers on a cost recovery basis with support from the National Institutes of Health. The tissue was passed on to Arupa Ganguly, who is studying retinoblastoma, a cancer of the eye, at the University of Pennsylvania.
Ganguly was surprised and apprehensive months later when NDRI emailed her saying the mother of donated tissue wanted to learn more about how the retina was being used. That was unusual because research donations generally are anonymous.
The geneticist waited a day or two, then wrote an explanation of her work and forwarded it back through NDRI. Soon the researcher and mother were talking by phone and Sarah would visit the lab. Even then, Ganguly felt very uncomfortable. "Something very bad happened to your son Thomas but it was a benefit for me, so I'm feeling very bad," she told Sarah.
"And Sarah said, Arupa, you were the only ones who wanted his retinas. If you didn't request them, they would be buried in the ground. It gives me a sense of fulfillment to know that they were of some use," Ganguly recalls. And her apprehension melted away. The two became friends and have visited several times.
Sarah Gray visits Dr. Arupa Ganguly at the University of Pennsylvania's Genetic Diagnostic Laboratory.
(Photo credit: Daniel Burke)
Reading Sarah Gray's story led Gregory Grossman to reach out to the young mother and to create Hope and Healing, a program that brings donors and researchers together. Grossman is director of research programs at Eversight, a large network of eye banks that stretches from the Midwest to the East Coast. It supplies tissue for transplant and ocular research.
"Research seems a cold and distant thing," Grossman says, "we need to educate the general public on the importance and need for tissue donations for research, which can help us better understand disease and find treatments."
"Our own internal culture needs to be shifted too," he adds. "Researchers and surgeons can forget that these are precious gifts, they're not a commodity, they're not manufactured. Without people's generosity this doesn't exist."
The initial Hope and Healing meetings between researchers and donor families have gone well and Grossman hopes to increase them to three a year with support from the Lions Club. He sees it as a crucial element in trying to reverse the decline in ocular donations even while research needs continue to grow.
What people hear about is "Tuskegee, Henrietta Lacks, they hear about the scandals, they don't hear about the good news. I would like to change that."
Since writing about her experience in the 2016 book "A Life Everlasting," Gray has come to believe that potential donor families, and even people who administer donation programs, often are unaware of the possibility of donating for research.
And roadblocks are common for those who seek to do so. Just like her, many families have had to be persistent in their quest to donate, and even educate their medical providers. But Sarah believes the internet is facilitating creation of a grassroots movement of empowered donors who are pushing procurement systems to be more responsive to their desires to donate for research. A lot of it comes through anecdote, stories, and people asking, if they have done it in Virginia, or Ohio, why can't we do it here?
Callum Gray and Dr. Arupa Ganguly hug during his family's visit to the lab.
(Photo credit: Daniel Burke)
Gray has spoken at medical and research facilities and at conferences. Some researchers are curious to have contact with the families of donors, but she believes the research system fosters the belief that "you don't want to open that can of worms." And lurking in the background may be a fear of liability issues somehow arising.
"I believe that 99 percent of what happens in research is very positive, and those stories would come out if the connections could be made," says Sarah Gray. But what they hear about is "Tuskegee, Henrietta Lacks, they hear about the scandals, they don't hear about the good news. I would like to change that."
The rise of remote work is a win-win for people with disabilities and employers
Disability advocates see remote work as a silver lining of the pandemic, a win-win for adults with disabilities and the business world alike.
Any corporate leader would jump at the opportunity to increase their talent pool of potential employees by 15 percent, with all these new hires belonging to an underrepresented minority. That’s especially true given tight labor markets and CEO desires to increase headcount. Yet, too few leaders realize that people with disabilities are the largest minority group in this country, numbering 50 million.
Some executives may dread the extra investments in accommodating people’s disabilities. Yet, providing full-time remote work could suffice, according to a new study by the Economic Innovation Group think tank. The authors found that the employment rate for people with disabilities did not simply reach the pre-pandemic level by mid-2022, but far surpassed it, to the highest rate in over a decade. “Remote work and a strong labor market are helping [individuals with disabilities] find work,” said Adam Ozimek, who led the research and is chief economist at the Economic Innovation Group.
Disability advocates see this development as a silver lining of the pandemic, a win-win for adults with disabilities and the business world alike. For decades before the pandemic, employers had refused requests from workers with disabilities to work remotely, according to Thomas Foley, executive director of the National Disability Institute. During the pandemic, "we all realized that...many of us could work remotely,” Foley says. “[T]hat was disproportionately positive for people with disabilities."
Charles-Edouard Catherine, director of corporate and government relations for the National Organization on Disability, said that remote-work options had been advocated for many years to accommodate disabilities. “It’s a little frustrating that for decades corporate America was saying it’s too complicated, we’ll lose productivity, and now suddenly it’s like, sure, let’s do it.”
The pandemic opened doors for people with disabilities
Early in the pandemic, employment rates dropped for everyone, including people with disabilities, according to Ozimek’s research. However, these rates recovered quickly. In the second quarter of 2022, people with disabilities aged 25 to 54, the prime working age, are 3.5 percent more likely to be employed, compared to before the pandemic.
What about people without disabilites? They are still 1.1 percent less likely to be employed.
These numbers suggest that remote work has enabled a substantial number of people with disabilities to find and retain employment.
“We have a last-in, first-out labor market, and [people with disabilities] are often among the last in and the first out,” Ozimek says. However, this dynamic has changed, with adults with disabilities seeing employment rates recover much faster. Now, the question is whether the new trend will endure, Ozimek adds. “And my conclusion is that not only is it a permanent thing, but it’s going to improve.”
Gene Boes, president and chief executive of the Northwest Center, a Seattle organization that helps people with disabilities become more independent, confirms this finding. “The new world we live in has opened the door a little bit more…because there’s just more demand for labor.”
Long COVID disabilities put a premium on remote work
Remote work can help mitigate the impact of long COVID. The U.S. Centers for Disease Control and Prevention reports that about 19 percent of those who had COVID developed long COVID. Recent Census Bureau data indicates that 16 million working age Americans suffer from it, with economic costs estimated at $3.7 trillion.
Certainly, many of these so-called long-haulers experience relatively mild symptoms - such as loss of smell - which, while troublesome, are not disabling. But other symptoms are serious enough to be disabilities.
According to a recent study from the Federal Reserve Bank of Minneapolis, about a quarter of those with long COVID changed their employment status or working hours. That means long COVID was serious enough to interfere with work for 4 million people. For many, the issue was serious enough to qualify them as disabled.
Indeed, the Federal Reserve Bank of New York found in a just-released study that the number of individuals with disabilities in the U.S. grew by 1.7 million. That growth stemmed mainly from long COVID conditions such as fatigue and brain fog, meaning difficulties with concentration or memory, with 1.3 million people reporting an increase in brain fog since mid-2020.
Many had to drop out of the labor force due to long COVID. Yet, about 900,000 people who are newly disabled have managed to continue working. Without remote work, they might have lost these jobs.
For example, a software engineer at one of my client companies has struggled with brain fog related to long COVID. With remote work, this employee can work during the hours when she feels most mentally alert and focused, even if that means short bursts of productivity throughout the day. With flexible scheduling, she can take rests, meditate, or engage in activities that help her regain focus and energy. Without the need to commute to the office, she can save energy and time and reduce stress, which is crucial when dealing with brain fog.
In fact, the author of the Federal Reserve Bank of New York study notes that long COVID can be considered a disability under the Americans with Disability Act, depending on the specifics of the condition. That means the law can require private employers with fifteen or more staff, as well as government agencies, to make reasonable accommodations for those with long COVID. Richard Deitz, the author of this study, writes in the paper that “telework and flexible scheduling are two accommodations that can be particularly beneficial for workers dealing with fatigue and brain fog.”
The current drive to return to the office, led by many C-suite executives, may need to be reconsidered in light of legal and HR considerations. Arlene S. Kanter, director of the disability law and policy program at the Syracuse University College of Law, said that the question should depend on whether people with disabilities can perform their work well at home, as they did during Covid outbreaks. “[T]hen people with disabilities, as a matter of accommodation, shouldn’t be denied that right,” Kanter said.
Diversity benefits
But companies shouldn’t need to worry about legal regulations. It simply makes dollars and sense to expand their talent pool by 15% of an underrepresented minority. After all, extensive research shows that improving diversity boosts both decision-making and financial performance.
Companies that are offering more flexible work options have already gained significant benefits in terms of diverse hires. In its efforts to adapt to the post-pandemic environment, Meta, the owner of Facebook and Instagram, decided to offer permanent fully remote work options to its entire workforce. And according to Meta chief diversity officer Maxine Williams, the candidates who accepted job offers for remote positions were “substantially more likely” to come from diverse communities: people with disabilities, Black, Hispanic, Alaskan Native, Native American, veterans, and women. The numbers bear out these claims: people with disabilities increased from 4.7 to 6.2 percent of Meta’s employees.
Having consulted for 21 companies to help them transition to hybrid work arrangements, I can confirm that Meta’s numbers aren’t a fluke. The more my clients proved willing to offer remote work, the more staff with disabilities they recruited - and retained. That includes employees with mobility challenges. But it also includes employees with less visible disabilities, such as people with long COVID and immunocompromised people who feel reluctant to put themselves at risk of getting COVID by coming into the office.
Unfortunately, many leaders fail to see the benefits of remote work for underrepresented groups, such as those with disabilities. Some even say the opposite is true, with JP Morgan CEO Jamie Dimon claiming that returning to the office will aid diversity.
What explains this poor executive decision making? Part of the answer comes from a mental blindspot called the in-group bias. Our minds tend to favor and pay attention to the concerns of those in the group of people who seem to look and think like us. Dimon and other executives without disabilities don’t perceive people with disabilities to be part of their in-group. They thus are blind to the concerns of those with disabilities, which leads to misperceptions such as Dimon’s that returning to the office will aid diversity.
In-group bias is one of many dangerous judgment errors known as cognitive biases. They impact decision making in all life areas, ranging from the future of work to relationships.
Another relevant cognitive bias is the empathy gap. This term refers to our difficulty empathizing with those outside of our in-group. The lack of empathy combines with the blindness from the in-group bias, causing executives to ignore the feelings of employees with disabilities and prospective hires.
Omission bias also plays a role. This dangerous judgment error causes us to perceive failure to act as less problematic than acting. Consequently, executives perceive a failure to support the needs of those with disabilities as a minor matter.
Conclusion
The failure to empower people with disabilities through remote work options will prove costly to the bottom lines of companies. Not only are limiting their talent pool by 15 percent, they’re harming their ability to recruit and retain diverse candidates. And as their lawyers and HR departments will tell them, by violating the ADA, they are putting themselves in legal jeopardy.
By contrast, companies like Meta - and my clients - that offer remote work opportunities are seizing a competitive advantage by recruiting these underrepresented candidates. They’re lowering costs of labor while increasing diversity. The future belongs to the savvy companies that offer the flexibility that people with disabilities need.