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An exciting new technology has tinkered with the very DNA that makes us who we are, offering new hope for new treatments for difficult diseases.
But this advanced approach also brings many thorny ethical questions about how technology should be used, addressed and paid for.
Experts and public figures such as billionaire philanthropist Bill Gates have warned that there were serious problems that everyone should be concerned about.
Gates is particularly worried about how the high prices of these "gene therapies", which aim to treat diseases causing genetic causes, could mean that only wealthy people have access. And that is a valid concern, said Business Insider Holly Tabor, associate director for clinical ethics and education at the Center for Biomedical Ethics at Stanford University.
"Being a person with a rare disease can become:" There is treatment and I can not afford it, "Tabor said.
Some gene therapies are already sold in the US and around the world, but there is also some sort of rush to gene therapy, with even more products in development and big deals for biotechs working in the field. space. According to one estimate, up to 30 drugs of this type are expected to be launched over the next five years.
Read more: Medications that cost as much as a home are on the brink of treating rare and devastating diseases. The United States is struggling to find a way to pay for them.
This means that companies are already dealing with ethical dilemmas, even if they think more about it in terms of patient participation in their research, Tabor said.
An ethical question with a tragic story
In addition to the award, there is also a wide range of ethical issues facing companies testing experimental gene therapies, and even more difficult issues ahead with the release of new products, Tabor told Gene Therapy on Wednesday. for Rare Disorders Conference in Boston this week.
Companies need patients to participate in their clinical trials and experiment with experimental drugs for approval and, ultimately, for sale.
But patients who participate in it must also fully understand the risks and potential benefits, a concept of obscure scientific research called "informed consent" that has been particularly controversial in this area.
Indeed, in the 1990s, a young man, Jesse Gelsinger, became the first patient to die in gene therapy research. Questions about his level of knowledge of the risks, as well as the conflicts of interest between the scientists involved have sparked a public outcry and investor inquiries such as the Food and Drug Administration.
The Gelsinger story has also formed a lasting debate about informed consent, how to treat it, and whether new risk products should be tested only on the sickest patients.
Scientists have frameworks to think about promising new drugs and the serious ethical issues they raise, Tabor noted, but there are limits to what even scientists know about gene therapy.
There is a great deal of uncertainty about the effectiveness of gene therapy, its duration, the potential risks and when they might occur.
Patients who participate in trials are at high risk. But they and their families may also be desperate for better options and want to neglect these risks.
"Hope in humans is a wonderful thing," Tabor said. But this "can be a difficult and risky task if it is not addressed in clinical trials".
And these ethical issues are likely to become even more pronounced as more and more gene therapies are commercialized, Tabor said. The therapies are "at the limit of the benefits and risks of this knife," she said, and may well stay in this place for a while.
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