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The Stanford label on Bill Gates cares about gene therapy

An exciting new technology has made it possible to think about the DNA itself that makes us who we are and gives up fresh hope for new cures for difficult diseases.

But the groundbreaking approach also brings with it a barrel of tough ethical questions about how technology is to be used, approached and paid.

Experts and public figures who Billard Gates billionaire philanthropist have warned that these are serious issues that everyone should care about.

Gates has particularly expressed concerns about how high rates for these gene therapies, which are aimed at treating diseases by their genetic causes, may mean that only wealthy people will have access. And there is a valid concern, Holly Tabor, Assistant Director of Clinical Ethics and Education at Stanford University's Biomedical Ethics Center, told Business Insider.

"Being a person with a rare disease can be," It's treatment, and I can't afford it, "Tabor said.

Some gene therapies are already sold in the US and elsewhere, but it's also a Some kind of gene therapy therapy, with even more products being developed and major biotechnology deals working in space, with an estimated up to 30 such "million dollar drugs" to start over the next five years.

Read more: Drugs that cost as much as a house are on the way to treating rare and debilitating diseases. The US distorts to find out how to pay for them.

That means businesses are already addressing ethical dilemmas , although they think more about how to get patients involved and involved in their research, Tabor said.

An ethical problem with a tragic story

In addition to price, there is also a broad and extensive basket with ethical problems confronting seals create testing experimental gene therapies, and even more difficult problems as more products come to market, Sa Tabor Wednesday, and spoke at Gene Therapy for the Rare Disorders conference in Boston this week.

Businesses need patients to participate in their clinical trials and try experimental drugs to get them approved and eventually sell them.

However, patients who participate must also fully understand both the risks and potential benefits, an unclear scientific research concept called "informed consent" which has been particularly controversial in this area.

It was because in the 1

990s, a young man named Jesse Gelsinger was the first patient to die in gene therapy research. Questions about how well he was informed of the risks, along with issues of conflicts of interest among the researchers involved, exclaimed public outbreaks and investigations of players such as food and drug trafficking.

Gelsinger's history has also shaped a lasting debate on informed consent, how to handle it, and whether risky new products should be tested only on the sick patients.

Researchers have a framework for thinking about promising new drugs and the major ethical issues they address, Tabor notes, but there are limits to how much even the researchers know about gene therapy.

There is much uncertainty about how well gene therapy will work, how long and what the risk may be, as well as when they may appear.

Patients taking part in studies take great risks. But they and their families may also be desperate for better alternatives and want to overlook these risks.

"Hope in people is a wonderful thing," Tabor said. But it "can be a challenging, risky thing if not addressed in clinical trials."

And these ethical issues will most likely be even more pronounced as more gene therapies come to market, Tabor said. The therapies are "on the edge of this knife's advantage and risk," she said, and could well stay on that spot for a while.

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