5. Privacy and Biotechnology

The human genome project

In the very near future researchers involved in the Human Genome Project will have deciphered humankind's genetic code. This knowledge will make it possible to detect families with heritable medical conditions and to identify individuals at high-risk of developing a hereditary disease. Researchers will be able to tag and track individuals over their lifetime and families across generations.

Forewarned, those with a genetic predisposition for diabetes, heart ailments, and mental disorders will be able to take precautions to avoid developing such conditions. Individuals at risk for heart disease will live longer and healthier lives by avoiding diets and lifestyles hazardous to their genetic inheritance.

In the case of some inherited conditions there will be neither cure nor any way to avoid the medical problem. But genetic testing will have made it possible to alert people to what awaits them. Thus predictive tests may help people in making decisions about marriage, having children, career choices, etc.

However, while such praiseworthy outcomes have been well publicized, far too little public attention has been given to the many complex social risks which will accompany advances in genetic biotechnology. Take, for example, the effects such knowledge could have on individual privacy.

Since genetic data is about as personal as information can be, predictive testing has the potential to affect individual freedom and privacy. Even though hereditary disposition does not mean a person will actually develop a disease, the mere evidence of this could influence how he or she is treated by others.

Once identified as having a hereditary disposition for a learning disability, drug dependency, physical or mental disorder, a person becomes vulnerable to discrimination in employment, housing, education, insurance coverage and other services. At present there are no regulations in place to protect the individual's right to refuse such testing. We also have no clear-cut laws which give the individual the right to decide who may have access to such information.

Modern genetic biotechnology may also revive the idea of eugenics or "race improvement". Eugenics assumes that individual success, attitude and good physical health are strictly hereditary.

In the past eugenics has led to the belief that it is in a nation's best interests to sterilize "inferior" humans. Individual DNA profiles could be used to classify citizens according to their genetic heredity or "value" to society. To ensure that future citizens come from "superior" stock, authorities could use such data to prevent or discourage those with "substandard" genes from reproducing.

But what constitutes a substandard gene? On what basis would genes be classified as good, better and best? Given the potential for error and personal bias, who could be entrusted to decide?

For these reasons, it might be in our best interests if access to and use of our personal medical information were limited and scrupulously regulated.

The "smart card" factor

In the past, when personal medical files were reasonably confidential, there was little threat to our privacy. But electronic data storage has completely changed this.

Apart from those who have legitimate access to patient records, our medical data can also be easily accessed for inappropriate reasons and by unauthorized parties. As if this isn't sufficient cause for concern, the problem of who knows what about our medical past, present, and future is about to become even more interesting.

Plans are now underway to place our medical record on "smart cards" which will enable instant computer access to our medical histories. Every Manitoban's medical record will be held in a central electronic data bank, accessible through a province-wide health information network. The information on the "smart card" may eventually include our DNA profile.

It is claimed that these digitized plastic "smart cards" will eliminate health care fraud, prescription abuse and possibly misdiagnoses.

But their capacity to store cradle-to-grave medical information can also be exploited for unintended and inappropriate purposes. A competent hacker can access such electronically stored data and cross-match it with information lifted from an individual's social insurance or banking record. The result will be a detailed personal profile which can be used, without our knowledge or permission, to determine suitability for credit, employment, life insurance, loans, and services of various kinds.

Because so very many people can access our medical files, it is likely some will be tempted to abuse this privilege. Someone may decide to spoil another's chances of being hired or elected. They may be tempted to sell our personal data, for profit. Some may simply gossip about what they know, thus spreading our personal medical information around the community. At present no laws or methods exist to effectively control access to electronic medical files.

Canadians also lack laws about ownership of personal medical information. Does your medical file belong to you, to the doctor who created it, to the clinic or hospital? If your personal medical record is not your property, does this mean that some or any of the information it contains can be released without your knowledge or permission?

Biotechnology and individual dignity

Accurate charting of the human genetic code will, without doubt, help lessen individual suffering from certain medical conditions. Few would argue that this is undesirable.

But the same knowledge could also be used to delimit individual aspirations, choices and opportunities. Until the privacy of personal medical records is safeguarded, each of us is a potential target for manipulation and unequal treatment. The result can be lifelong suffering of another kind.

By accelerating data collection and analysis, digital technology has advanced knowledge in many fields, swiftly and cost effectively. The benefits to medicine, business and research are undeniable.

But as digital technology has increased the scope of what can be known about each of us, it has also facilitated unrestrained access to previously confidential material. Ultimately, this relentless erosion of privacy threatens a most fundamental human right - the individual's right to dignity.

There are those who believe the benefits of genetic testing combined with the efficiency of "smart cards" far outweigh any negative effects on privacy and individual choice. However many others question the wisdom of forfeiting our individual rights in the interests of cost-effectiveness and technological progress.

As a society we have been careless about safeguarding individual dignity and privacy. At the very least, we owe it to ourselves and to future generations to explore and evaluate the issue of privacy in the medical field.

Concepts for exploration

1. privacy, individual dignity

2. Human Genome Project, genetic analysis

3. science, technology, biotechnology, digital technology

4. heritable medical conditions, predisposition

5. discrimination, eugenics

6. gene therapy, embryo manipulation

7. the human germ line, gene manipulation

8. confidentiality, data bank, smart card, hacker

9. cost effective

Projects

I. Read the novel "Brave New World" by Aldous Huxley.

As you read make notes of the following:

• Who are the main characters?
• Describe the forces that shape their lives.
• Describe the central conflict in the novel.
• How does the action unfold?
• What is the general mood of the novel?
• What is the author's attitude toward the world of his characters.
• What thoughts and questions did this novel raise in your mind?

Referring to your notes write an essay commenting on the world described in Huxley's novel.

What elements of this novel are applicable today?

What is your attitude toward that "brave new world"?

Would you desire to live in such a society?

Provide reasons for your views.

II. Read and Discuss

Genetic Engineering: Dreams and Nightmares

by Enzo Russo and David Cove. New York: W. H. Freeman and Co. Ltd., 1995.

III. Survey Research, Analysis and Discussion.

A class project which could become a community project.

On response sheets record your opinions to the each of the 10 statements on the following page.

For each statement indicate whether you (1) agree; (2) disagree; or (3) are undecided.

For each statement calculate the result by finding the percentage of those who
(1) agree; (2) disagree; or (3) are undecided.

What do these percentages reveal about people's attitudes toward the issue of individual privacy as it relates to genetic testing and to the "smart card"?

Survey Questionnaire:

1. If a medical examination reveals you have a hereditary predisposition for a disease, your doctor has an obligation to inform your family.

Agree Disagree Undecided

2. Every citizen should be required to undergo a painless genetic analysis.

Agree Disagree Undecided

3. The importance of cost savings and efficiency of medical "smart cards" far surpass any issues of individual privacy.

Agree Disagree Undecided

4. Information about a defective gene should remain strictly confidential between you and your doctor.

Agree Disagree Undecided

5. Insurance companies should be free to access the personal medical file of every applicant.

Agree Disagree Undecided

6. Your personal medical information should not be released without your permission.

Agree Disagree Undecided

7. Genetic analysis should be a routine part of any pre-employment screening process.

Agree Disagree Undecided

8. Your DNA profile should be accessible through your "smart card".

Agree Disagree Undecided

9. Each citizen should have the right to choose or to refuse genetic analysis.

Agree Disagree Undecided

10. Citizens should know what information is available through their "smart card".

Agree Disagree Undecided