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Unravelling the genome

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Ethical issues arising from genome sequencing

The knowledge provided by the Human Genome Project offers many benefits, but it also raises some major ethical issues. Consider some of these here.

A question of ethics

The Human Genome Project, and the projects which have followed have given us the key to human life itself. We know that we all have at least 99.99% of our DNA in common. Now the full human genome has been revealed, scientists are studying the genomes of different ethnic groups, trying to pinpoint the tiny differences which can lead to a tendency to develop particular illnesses and conditions.

As genome sequencing technology improves, it becomes realistic to think that in time there will be affordable machines in every hospital and GP’s surgery, sequencing the genome of patients and pathogens alike. There is talk of producing a full DNA profile of every new born baby, with the information stored on computer ready to be called up when needed. Such ideas have many potential benefits, including personally targeted medicines and lifestyle planning to avoid the risk of disease. But there are also some major ethical issues which need to be considered in detail before Pandora’s box is opened and everyone has their genome sequenced.

The major projects sequencing the human genome have always made consideration of the implications of the research an important aspect of their planning. You are presented here with a number of situations where detailed knowledge of the human genome could lead to real ethical headaches. In each case there are activities which will help you to reach decisions about what you feel would be right, and which will give you the opportunity to consider how other people might react differently.

Below are three examples of ethical issues.

Alcoholism and the genes

Alcoholism – addiction to alcohol - is a big problem in many areas of the world, including the UK. There are real difficulties for the alcoholic themselves - they may well be unable to hold down a job, drive or operate machinery safely. They also have a raised risk of liver damage, heart disease and loss of motor control. Suicide is much more common in alcoholics than in the general population.

The families of alcoholics are also affected. They are more likely to suffer abuse, neglect and divorce. Many road accidents are linked to drink-driving, and much of the crime that is committed is carried out under the influence of drink. It is estimated that between 10 and 15% of the American population is alcoholic – and the UK figures are not so very different. The cost of this problem is enormous in every way.

Results from the various human genome projects as well as from other studies suggest that there is a genetic tendency to become an alcoholic. A number of genes seem to be involved, and without doubt some people have increased genetic tendency to become alcoholic. In 2015, researchers from five UK universities discovered a genetic mutation in mice which makes them demonstrate a very strong preference for alcoholic water over water - when mice without the mutation are not interested in drinking alcohol. However alcoholism is not just genetic. Environment plays an important part as well. Obviously if you never drink alcohol, you won’t become an alcoholic however strong your genetic tendency to do so!

A number of different genes appear to be involved in increasing the risk of becoming an alcoholic and each of them will have two alleles. There is a non-alcoholic and an alcoholic form of the alleles. How likely you are to become an alcoholic if you start to drink will depend at least in part on which combination of alleles you have inherited from your parents.

Activity 1

Imagine a situation, when the results of the 100,000 Genome Project are available, where it is proposed to pass a law requiring everyone to be tested for their genetic status with respect to alcoholism. As a result of this law:

  • those people who have three or four ‘alcoholic’ alleles for different ‘high risk’ genes would have their driving licence marked or carry a card which shows their status

  • it would be illegal to sell alcohol to anyone possessing a marked licence or card

  • anyone with a marked licence or card found buying alcohol would be banned from driving for three years

  • anyone found selling alcohol to an individual with a marked licence or card would be fined £25,000

Wine Glasses

MPs proposing this law say it would reduce the level of alcoholism by preventing those most at risk from buying and consuming alcohol. At the same time this would reduce the NHS bill for treating alcohol-related disease, reduce road traffic accidents, crime, suicides, wife beating, child abuse and neglect as well as lowering the divorce rates. They claim that all of these changes would benefit individuals and society as a whole, as well as reducing government spending.

However, there are strong objections to this proposal from people who see this as the thin end of the wedge, removing people’s freedom of choice. They ask: "what else will we be forbidden to do because of the information in our genes?"

Other people want to know who will have the right to information showing that an individual has alcoholic tendencies – employers, potential partners, doctors, banks, insurers, mortgage lenders? They fear that the information in the genes, which only expresses a tendency and does not mean an individual will become an alcoholic, will be abused to prevent people getting work, buying a home, getting insurance. Who will decide who is allowed access to this information?

Work in a small group. Plan a report for a local TV station explaining the idea of this new law and communicating arguments both for and against the proposed legislation. If possible, present the outcome of your work as an actual report, using sound and video.

Teacher guidance: Taking into account the students you are working with, give consideration to success criteria for this activity before running it in class.

High flyers at risk

If someone carries the allele for Huntington’s disease it is currently certain that sooner or later they will develop the symptoms of the disease and eventually die. However, if genetic testing becomes routine, and the secrets of our DNA are revealed, then many more subtle and complex risks will show up – and the ethical dilemmas will multiply.

Much of the information in our genome will simply show an increased tendency towards certain conditions such as diabetes, Parkinson’s disease, heart disease, various types of cancer and Alzheimer’s. Whether we go on to develop the symptoms of these diseases will depend both on the rest of our genetic makeup and the lifestyle choices we make.

Consider pilots who fly commercial airliners. Obviously if a pilot has a heart attack whilst flying a plane carrying hundreds of people it is a serious situation for all concerned. It may well be possible in the fairly near future to carry out a genetic test to see if someone has an increased risk of developing heart disease in middle age.

Activity 2

Consider the following questions and answer each of them yourself.

  1. If such a test becomes available, should all airline pilots be forced to take it?

  2. If all pilots are tested, how should the information be used?

  3. If your DNA profile shows you have a raised likelihood of suffering heart disease in your 40s, should you be allowed to train and work as an airline pilot?

  4. Do you think it is acceptable for genetic information about an individual to be used in this way?

Discuss your answers with other people. Try and quantify the number of different opinions put forward and the number of people holding different views – can opposing views be reconciled?

To summarise the different views, and arguments, your conclusions could be presented in a short oral communication to the rest of the class. For further stretch and challenge, a short report could be written out summarising all views and conclusions.

Teacher guidance: Taking into account the students you are working with, give consideration to success criteria for this activity before running it in class.

You can learn more about Huntington's disease, diabetes and some of the other diseases mentioned here in our other web resources.


Life insurance at a premium

Life insurance companies always ask questions about your family health history before giving you life insurance. If you have a strong family history of certain diseases they may set the premiums you have to pay higher than average; the price you pay for being more likely to die, at which point the insurance company has to pay out!

But what if your DNA profile tells a clearer and more detailed story? For example, that you have inherited genes which means you are very likely to develop breast cancer in your 20s, that your genome indicates you are at a relatively high risk of becoming addicted to something – drinking, smoking, drugs or gambling, or that you are at a much higher risk than the rest of the population of having a heart attack whilst relatively young.

There are fears that if insurance companies have access to information like this, they will refuse to give certain people life insurance. That in turn would make it very difficult to get a mortgage and buy a house. So far, the insurance industry has not used genetic testing to weight premiums, and some people think they never will, because all of us will have something negative lurking in our genes and yet most people live to a ripe old age. Others think insurance as we know it will disappear when genetic testing of everyone becomes routine.

Activity 3

Read the following questions and try to answer and reflect on them within a group of students. To summarise the different views, and arguments, your conclusions could be presented in a short oral communication to the rest of the class. For further stretch and challenge, a short report could be written out summarising all views and conclusions.

  1. Do you think that genetic information about individuals should be made available to insurance companies, or should they simply be given population figures for different conditions to help them plan the risk they are taking with accuracy?

  2. Some people think there should be legislation to prevent insurance companies from refusing to insure someone on the basis of their DNA profile. What are the pros and cons of this idea?

Teacher guidance: Taking into account the students you are working with, give consideration to success criteria for this activity before running it in class.