Chapter 5.

Introduction

Student Video Activities for Abnormal Psychology
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Genetic Research: Violating One's Privacy?

Author: Ronald J. Comer

Photo Credit: image100/Corbis

Princeton University

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5.1 Genetic Research: Violating One's Privacy?

This video explores a nationwide genetic research project conducted in Iceland that attempts to identify genes that may predispose individuals for certain disorders. The researcher in charge was given the right to collect and analyze the private medical records of all Icelandic citizens. The video explores the ethical concerns and potential misuses of such information, while also considering the benefits that genetic research may provide.

Genetic Research: Violating One's Privacy?

For more than 1,000 years, Iceland's stark, forbidding landscape and harsh climate made it one of the most isolated countries in Western Europe. Repeated catastrophes like the Black Plague, a smallpox epidemic, and a major volcanic eruption, kept the population small and concentrated. So the 280,000 people who live here today are some of the most genetically similar people on earth.

Since their genes are so similar, the abnormal genes that can cause disease are easier to find. And that makes this one of the world's richest genetic laboratories. A gold mine for scientists searching for genes that cause disease. Another reason is that Iceland is a country obsessed with genealogy. Researchers can easily track family members who have inherited a disease, which makes it easier to find the genes that cause that disease.

Looking at your family, your ancestors, how far back can you go?

About 1,100 years.

Dr. Kari Stefansson is a genetic researcher who, five years ago, started deCODE, now a $600 million company, to find genes and sell information related to gene research.

If you find a gene that you believe has a role in the formation of disease, does that affect treatment of that disease?

The big hope is that we will be able to discover how we are genetically predisposed to diseases, so we can prevent disease from happening.

To better understand the relationship between a genetic predisposition to disease and getting that disease, Dr. Stefansson wants unprecedented access to all the medical records of Icelanders. These records are valuable because they reveal what lifestyle factors can interact with a gene to trigger a disease. Factors like drug and alcohol use, and sexual habits. And the more people in the group Dr. Stefansson studies, the better his chance of finding genes that cause disease.

The only way in which I can learn about diseases and health is by studying a group of people who have a particular disease, or a group of people who have avoided a particular disease. When you're looking at the individual, you can really not make basic discoveries about the nature of diseases.

In 1998, after extensive lobbying by Dr. Stefansson, the parliament of Iceland passed a law selling his company the exclusive right for 12 years to collect and analyze all the medical records of the entire population. This law, the first of its kind, presumes that Icelanders consent to giving their medical records to deCODE, unless they request in writing to be excluded.

The company will create a research data bank out of those records. But they will also market medical information from the data bank to health care organizations like HMOs, who can use that information to control their risks and cut costs, which could include denying coverage to people who might become costly to cover.

To me, this whole thing is done in a very unethical way.

[INAUDIBLE] daughter, an Icelander who has multiple sclerosis, is a member of a vocal minority who is in an uproar over Dr. Stefansson's planned data bank. She wants out of that data bank because she's concerned about her privacy.

Taking all this information and giving it to a private company, to sell information out of it, well I thought that was very dangerous.

What's the danger? Future customers are the insurance companies. That's something I'm not very comfortable about.

She's uncomfortable because she is worried that her family will be denied medical insurance because of their genetic link to her. I'm not concerned about myself. I've had MS for 34 years. But thinking about my son and grandchildren, that's what concerns me. That they will suffer from me having MS.

Dr. Stefansson says that the names of all individuals in the data bank will be encrypted, so no one in it will be identifiable. But even he agrees the databank is vulnerable.

Critics say that no information bank that can be 100% secure, that hackers can get in.

That is absolutely correct. You will never be able to provide 100% protection of information, just like you would never be able to provide 100% protection to gold, diamonds, and other valuables.

Many people here in your country believe that the potential benefits outweigh the risks. I think it's too much of a risk. I'm not prepared to take that risk.

But [? Rapp ?] and [? Honor ?] Goodmanson, like most Icelanders, are prepared to take the risk of being included in the data bank. They and nine of their 17 siblings suffer from osteoarthritis. And they participated in a deCODE study that has resulted in the discovery of the general location of a gene for that disease.

And why did you both decide to participate in this research?

I want the research to be able to solve this and tell us what really is wrong. The reason I want to participate is for my descendants, so that they will be able to get cured.

Are you afraid that, if they do find this gene, that that information could be used against your children? Say, by someone who says, well this person is going to have to have a hip replacement. I don't want to insure him or her. I don't want to hire him or her.

It doesn't bother me. I'm not afraid of someone misusing the information.

You feel the same way?

It doesn't bother me. And I participated because I hoped my children can be helped and have a better quality of life.

But Larry Gaston's priority is to protect the individual's right to control his medical information. And with the dramatic increase in the number of medical record data banks in the United States, he is concerned that the use of presumed consent and the marketing of medical record information as in Iceland, will become the norm in this country.

Who should have access to your medical records?

Access to your medical records should principally be governed by the patient himself. They may want occasionally to have their insurers because they want their medical information reimbursed. But there oughtn't to be a rule that says, I simply sign away my right to control my information.

How do you think deCODE's database will be judged. I think deCODE's database will be judged as a bold scientific experiment that has promise for great human good, but failed to pay enough careful attention to the sensitivities of ethics and human rights.

5.2 Check Your Understanding

Question 5.1

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Correct!
Incorrect.

Question 5.2

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Correct!
Incorrect.

Question 5.3

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Correct!
Incorrect.

Question 5.4

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Correct!
Incorrect.

5.3 Activity Completed!

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