One of the ethical controversies that surround genetic research is the assumption that people with disabilities are impaired through genetic factors and need to be treated and made normal, according to the University of Missouri Center for Health Ethics.

The World Health Organization defines disability not as an attribute of an individual but as a complex collection of conditions, personal characteristics, activities and environment.

Some in the deaf community say they don’t have a disability and point to their use of American Sign Language, video and text messaging, and the availability of captioning on TV and movies, to accommodate hearing loss.

They blame the high unemployment rate for people who are deaf on negative attitudes and discrimination.

According to the National Deaf Center on Post-Secondary Outcomes, only 48 percent of deaf college graduates were employed in 2014, compared to 72 percents of graduates without hearing impairments.

And even with federal protections, like the Americans with Disabilities Act, individuals who are deaf continue to experience inequities in accessing health care and other services.

Now, according to researchers, there is growing evidence that gene therapy could be an effective treatment for some inherited types of hearing loss, deafness and balance disorders.

In the Dec. 20, 2017, issue of Nature Journal, researchers reported on the successful injection of a genome-editing chemical into young mice that appeared to have prevented progressive hearing loss and otherwise would have gone deaf.

The researchers used a gene-editing technique called CRISPR Cas-9 to remove a defective gene that destroys tiny hairs inside the ear needed for normal hearing.

According to the article, a mutation in a gene that causes Usher syndrome, a hereditary disease that causes hearing and vision loss, could be repaired using the targeted-chemical process to cut through specific sections of double-stranded DNA and remove or repair the gene.



Usher syndrome is the most common cause of inherited blindness and deafness.

Still, researchers warned they have a long way to go until the gene-editing technology is ready for human clinical trials.

Then again, gene editing can have unintended consequences, as the authors of a recent study from the U.K.’s Wellcome Sanger Institute revealed in a 2018 article in Nature Biotechnology.

The study reviewed results of mice previously treated for blindness using the CRISPR technology and found that although the technique successfully corrected the blindness gene, two of the mice had more than 1,500 unintended gene mutations — meaning the researchers had altered genes they never intended to change.

In a gene-editing case involving humans, Feng Zhang, one of the inventors of CRISPR, told the Associated Press that two babies who reportedly were gene-edited as embryos by Chinese scientist He Jiankui — who claims the process will prevent HIV from entering their immune systems — could become more susceptible to West Nile virus. Their offspring also could be affected, Zhang said.

In 2018, a new genetically based drug was approved by the U.S. Food and Drug Administration to fight cancer: Vitrakvi, a medication for adults and children whose cancers have a genetic mutation called TRK fusion. Also late last year, Keytruda, an immunotherapy drug, received expanded approval by the FDA to fight malignancies that bear a specific genetic signature.

Oncologists will have to know the genetic makeup of a tumor to prescribe these drugs, but only 12 percent of patients with late-stage metastatic cancer are getting the tests, according to a report on the genetic testing company, Foundation Medicine, in the MIT Technology Review.

However, broad-spectrum genetic testing is expensive, and many insurers won’t cover the tests or the new drugs.

Dan Rhodes, CEO of Strata Oncology, a tumor-sequencing company, said in the article that his company is giving away free testing to cancer patients to help match them to experimental treatments being studied in clinical trials.

Andy Winnegar has spent his career in rehabilitation and is based in Santa Fe as a training associate for the Southwest ADA Center. He can be reached at a@winnegar.com.

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