If you ever received a consent form mere hours or minutes before a hospital procedure, you can imagine how confused the mother was when she received a form asking her to agree to let one of her unborn twins participate in Dr. He Jiankui's gene-editing experiment. Relying on information learned from Dr. Michael Deem, his U.S. Ph.D. mentor, Dr. He used the CRISPR-Cas9 technique to disable the gene that enables HIV to enter a cell by attaching itself to a protein.
Medical professionals cannot be expected to write informed consent forms lay people can understand. Communication experts in the countries where forms are used need to choose the best ways to translate modern medical research and procedures and to pilot test forms before they are used.
Since drugs produced in one country are used and sold at different prices throughout the world, they have the potential to be weaponized by overpricing them for, or withholding them from, enemy countries.
Other practices also require attention. Some countries and companies offer financial rewards for stealing intellectual property.
The FBI is investigating Yu Zhou for making millions by forming a company based on a discovery he made while using U.S. government grants and performing research owned by Ohio's National Children;s Hospital while he worked in a lab there for ten years.
In a major example of "ethics dumping," the practice of performing a medical procedure in another country that is banned at home, China's health ministry prevented Italian neurosurgeon, Dr. Sergio Canavero, from attaching the head of a paralyzed patient to the body of a deceased donor in China.
When a doctor suggests a child take a prescribed drug or undergo a procedure, does the child's parent or guardian truly understand the side effects and alternatives? Modern medicine is not only costly; it is complicated. Busy adults often lack time to obtain a second opinion, ask a pharmacist if there is a lower cost generic, analyze internet opinions, or subscribe to and read a newsletter from a medical research center. At the very least, a relationship with a child's doctor and specialists needs to feel comfortable enough to ask questions and follow-up questions to make answers clear. As soon as children are old enough, involve
them in the questioning. They want to know if a needle or the dentist will hurt and how long they will be in the hospital or have to wear a cast or braces.
Teachers, scouting groups, boys and girls clubs, etc. might look for opportunities to assign reports on subjects, such as gene editing, bioethics, using drones to deliver drugs in Africa, hair growth products, vaccines, and vaping. Also, see if the Red Cross, nursing organizations, emergency medical services, local hospitals, or other medical associations have outreach programs that provide speakers and tours.
Students always ask how what they are supposed to learn is relevant. Everywhere in the world learning about health is relevant.
Showing posts with label HIV. Show all posts
Showing posts with label HIV. Show all posts
Monday, October 7, 2019
Friday, October 26, 2018
Disabilities Need Not Define Anyone
Nobel prizes do not begin to recognize all the scientific advances overcoming human frailties. Actually, scientists and others have a lot to work with: the capabilities of the human body, including its immune system, and brains.
From a wheelchair-accessible igloo built by a Dad to robotic legs that enabled a veteran to walk for the first time in 30 years, people are not giving up on those with infirmities. A performer with no feet can be "Dancing with the Stars" on TV, a young lady with Downs Syndrome has modeled a gown on a designer's catwalk, a sightless artist's paintings hang in a gallery, a former spy recovered from being poisoned by foreign agents. Google's 2019 Super Bowl commercial showed how video game controllers can be adapted for those with disabilities. Users can open packaging for games with their teeth, if necessary.
Around the world, people are figuring out how to provide the little boost some need to keep connected with society. That's always been done. Ben Franklin realized older people needed bifocals when their eyes' focus changed. Someone came up with white canes to help sighted people look out for the blind. FDR could become President with the help of leg braces, a wheelchair, and a car's driver. And Dr. Salk created a cure for polio so victims of the disease no longer needed these assists.
At abledata.com, check out "assistive technology information" about the wide range of products available to overcome walking, sitting, personal care, communication, hearing, and other limitations.Also see usicd.org (the U.S. International Council on Disabilities), the authors at disabilityinkidlit.com, and read The Unbeatable Squirrel Girl 2 Fuzzy, 2 Furious by Shannon and Dean Hale. A teen character wears a hearing aid.
Several special projects deserve mention. In Washington, D.C., deaf, hard-of-hearing, and hearing employees run a Starbucks using American Sign Language. In Brazil, trendwatching.com tells how a foundation for the blind and a beer institute teamed up to teach blind students to employ their enhanced smell and taste in service to the sensory analysis of beer. The first of "The 50 Best Inventions of 2018" featured by TIME magazine this year (Nov.28/Dec.3, 2018 issue) is a robotic arm that updated the artificial arm, shown on PBS's "Antique Roadshow," that was invented for injured soldiers in the American Civil War.
While helping an 80-year-old friend navigate a luncheon outing, I saw how easily she converted her walker to a wheelchair, locked a brake, and hung her purse on the handle. If she wanted to take any of what she didn't eat home, she had a bag hanging ready on the other handle. To fit in my car, the unlocked walker/chair easily collapsed. In his final years, a therapy dog helped former President George H. W. Bush the way animals, including a horse, assist and comfort ill, blind, and other disabled people.
According to TIME magazine's section on 2018's innovations (Nov. 26/Dec. 3, 2018), three million Americans need to get around in wheelchairs. Whill's new $4,000 electric Model C1 wheelchair, available in different colors, can travel 10 miles indoors and out, climb 2-inch obstacles, maneuver in cramped spaces, and disassemble for transport in minutes.
Elsewhere, scientists work to discover what can help us and what can hurt us. Glyphosate was hailed as a way to rid fields of weeds but it also was discovered to be a possible cancer-causing agent for humans. The same gene editing that promises to rid the world of malaria-carrying mosquitoes can inject dangerous mutations into generations of humans. Controversy continues to fuel debate over how cellphone radiation might contribute to memory loss, brain cancer and sperm damage. The manufacturer of Truvada tries to warn those who use the pill that reduces the risk of contracting HIV through sex that additional safe sex practices are still needed to prevent pregnancy, syphilis and other sexually transmitted infections. Besides, for Truvada or its generic equivalents to work, those who need it have to come forward.
The good news is: young people always will have an opportunity to create ways to overcome human limitations, and all of us humans know there are folks thinking up ways to make our lives better.
From a wheelchair-accessible igloo built by a Dad to robotic legs that enabled a veteran to walk for the first time in 30 years, people are not giving up on those with infirmities. A performer with no feet can be "Dancing with the Stars" on TV, a young lady with Downs Syndrome has modeled a gown on a designer's catwalk, a sightless artist's paintings hang in a gallery, a former spy recovered from being poisoned by foreign agents. Google's 2019 Super Bowl commercial showed how video game controllers can be adapted for those with disabilities. Users can open packaging for games with their teeth, if necessary.
Around the world, people are figuring out how to provide the little boost some need to keep connected with society. That's always been done. Ben Franklin realized older people needed bifocals when their eyes' focus changed. Someone came up with white canes to help sighted people look out for the blind. FDR could become President with the help of leg braces, a wheelchair, and a car's driver. And Dr. Salk created a cure for polio so victims of the disease no longer needed these assists.
At abledata.com, check out "assistive technology information" about the wide range of products available to overcome walking, sitting, personal care, communication, hearing, and other limitations.Also see usicd.org (the U.S. International Council on Disabilities), the authors at disabilityinkidlit.com, and read The Unbeatable Squirrel Girl 2 Fuzzy, 2 Furious by Shannon and Dean Hale. A teen character wears a hearing aid.
Several special projects deserve mention. In Washington, D.C., deaf, hard-of-hearing, and hearing employees run a Starbucks using American Sign Language. In Brazil, trendwatching.com tells how a foundation for the blind and a beer institute teamed up to teach blind students to employ their enhanced smell and taste in service to the sensory analysis of beer. The first of "The 50 Best Inventions of 2018" featured by TIME magazine this year (Nov.28/Dec.3, 2018 issue) is a robotic arm that updated the artificial arm, shown on PBS's "Antique Roadshow," that was invented for injured soldiers in the American Civil War.
While helping an 80-year-old friend navigate a luncheon outing, I saw how easily she converted her walker to a wheelchair, locked a brake, and hung her purse on the handle. If she wanted to take any of what she didn't eat home, she had a bag hanging ready on the other handle. To fit in my car, the unlocked walker/chair easily collapsed. In his final years, a therapy dog helped former President George H. W. Bush the way animals, including a horse, assist and comfort ill, blind, and other disabled people.
According to TIME magazine's section on 2018's innovations (Nov. 26/Dec. 3, 2018), three million Americans need to get around in wheelchairs. Whill's new $4,000 electric Model C1 wheelchair, available in different colors, can travel 10 miles indoors and out, climb 2-inch obstacles, maneuver in cramped spaces, and disassemble for transport in minutes.
Elsewhere, scientists work to discover what can help us and what can hurt us. Glyphosate was hailed as a way to rid fields of weeds but it also was discovered to be a possible cancer-causing agent for humans. The same gene editing that promises to rid the world of malaria-carrying mosquitoes can inject dangerous mutations into generations of humans. Controversy continues to fuel debate over how cellphone radiation might contribute to memory loss, brain cancer and sperm damage. The manufacturer of Truvada tries to warn those who use the pill that reduces the risk of contracting HIV through sex that additional safe sex practices are still needed to prevent pregnancy, syphilis and other sexually transmitted infections. Besides, for Truvada or its generic equivalents to work, those who need it have to come forward.
The good news is: young people always will have an opportunity to create ways to overcome human limitations, and all of us humans know there are folks thinking up ways to make our lives better.
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