Learn About Carrier Screening Genetic Iceland

Posted on

Iceland is reported to face DNA dilemma, whether or not to notify people who carry the cancer genes. If you are interested in the carrier screening genetic in Iceland, here is everything about it that you need to know.

There was a report that said the researchers from the United States will be able to press a button that can identify a lot of people who carry genes that can cause cancer in the future, including the ones that cause breast cancer.

The same thing happens in Iceland. This country could easily pinpoint which of its people are risky to specific diseases and these people will be notified immediately thanks to its relatively uniform population and extensive DNA databases. However, the idea was refused by the government. Why did they refuse it?

Since the end of 1990s, a lot of Iceland citizens have agreed to contribute their DNA to a public private science project that aims to deliver medical breakthroughs. However, those people never explicitly agreed to be notified of personal health risks that might be discover by the scientists. According to the Icelandic regulators, without the explicit consent, both government and private industry have no right to notify those with these risks.

carrier screening genetic - autosomal recessive inheritance
Autosomal Recessive Inheritance

A re-owned Icelandic neurologist and biotech leader who has been at the center of the nation’s DNA debate named Dr. Kari Stefansson said in his Reykjavik office that it is utter, thorough bulls***. He said that there is a tradition in American and Icelandic society to save those who are in life threatening situations, even without asking them for informed consent. The man questioned why should there will be a different rule if the danger is because of a mutated gene.

In the country named Iceland, the promises of technology and personalized medicine are fighting with the concerns over privacy and medical norms. Meanwhile, in the United States and the other places, both scientists and doctors will soon have a chance to tell everyone about their predispositions to diseases. The question is that at what age should they be told and with what caveats. People are wondering whether the researchers should only tell people about diseases that can be prevented like a mastectomy or the ones that cannot be stopped like Alzheimer. A question about the thing to do when these people do not want to know also being questioned.

For the ones who love to throw criticism to the government like Stefansson, the answers are straightforward. The man compares the situation that happens Iceland to the obligation of people in daily life if they see another in a danger. He compared the situation with the case when someone falls into the harbor. When it happens, does he need to sign an informed consent before pulling that one out of the sea?

It is not shocking that Iceland that is populated by only 330,000 people has turned into a living laboratory for DNA testing and the privacy issues that surround the country. Almost everyone traces their lineage back to the muiz of Norsk and Celtic peoples, who are known as the original Viking settlers. Over the centuries, the gene pool of this country has not been changed. One of the reasons is due to its isolation.

In fact, this homogeneity makes it possible for the researchers to easily isolate genes that cause the diseases. For instance, Iceland citizens carry just one mutation of a gene that causes breast cancer called BRCA2. While only 0.8% of people from Iceland possess the gene, Stefansson said that there is an 86% chance of it to causes cancer in women who carry it. Not only women, male carriers can also be threatened with a higher risk of prostate cancer that cannot be threaten.

Since the middle of 1990s, the company owned by Stefansson called deCODE Genetics has taken over the genomic research of the nation. According to his words, the company has the ability to access a DNA database of 60,000 citizens that have been fully sequenced plus 180,000 people whose genetic code has been partially sequenced.

Unfortunately, the so-called biotech went bankrupted in 2009 when the country was in the financial crisis. The good news is that the company has a chance to rebounded thanks to Amgen that purchased it in 2012 for $415 million. Since its rebound time, it has become the first one to identify a gene variant that is liked to the late-onset Alzheimer’s and one that increases the risk of osteoporosis and specific cancers.

Stefansson has been known as one of the big names in Iceland, as said by an Iceland origin and medical professor at the University of California, Irvine named Dr. Bogi Andersen. He said that the popularity of Kari has surpassed the popularity of a pop singer named Bjork.

While Stefansson popularity is no joke and everyone admits it, he is also known as a controversial figure. The man known to be straightforward who tends to not thinking when speaking. He loves to criticize the Icelandic government.

Just two years after making deCODE, Stefansson and a few people in the company asked the Iceland’s Parliament to pass an effort to make a vast database of the genetic information and medical records of Iceland citizens known as the Health Sector Database Act. It is for the research purposes. Apparently, a private licensee is also allowed by the law to control and access this data. The company belongs to Stefansson became the one that holds the license.

Most people in Iceland actually supported the law. An uproar was caused due to one of its lesser known provisions. Under the law, the personal data belongs to the Iceland citizens was excluded from the database only if an individual asked to opt out. However, under the normal research protocols, those individuals are only included in a study if they agree explicitly. When the company called deCODE was found, it broke every bioethics norm, as said by a Louisiana State University law professor who happens to be an expert in biotechnology issues named Michael Malinowski.

Leave a Reply

Your email address will not be published.