Brebeuf College School

Science Department

Biotechnology/Ethics

GENETIC RESEARCH ADVANCES -- BUT FOR THE BEST?

  Among the Fears: Insurance Screening, and Testing for the Unborn

 

 LONDON, NOV. 11, 2000 (ZENIT.org).- Recent announcements about developments

  in the field of genetics are raising new hopes -- and warnings.

 

  On the positive side, early detection of a propensity toward some diseases

  could enable preventative action. As well, treatment involving genetic

  therapy could alleviate serious illnesses. On the negative side, some fear

  discrimination because of their genetic makeup, while the prospect of

  tampering with man's genetic heritage also raises justified concern.

 

  Genetic studies

  An example of the benefits of genetic research was published Oct. 30 by The

  Guardian newspaper in England. Ten remote villages in southern Italy have

  been selected for a study where scientists can harvest the racially pure

  inhabitants' DNA to identify the causes of disease.

 

  This area has been isolated for centuries by mountains and forest, and the

  villagers' genetic history stretches back to the Greeks and could hold the

  key to cures for Alzheimer's disease, asthma, cancer and hypertension. The

  inhabitants agreed to become a living laboratory after it was explained

  they possessed a unique gene pool that could help create better drugs.

 

  Scientists chose Cilento, two hours south of Naples, because it has been

  undisturbed by large-scale immigration for millennia. Some of the villages,

  which each have between 600 and 2,000 inhabitants, still speak ancient

  Greek and Albanian. Another 70 Cilento villages are expected to join the

  project next year. By comparing genetically similar people it is much

  easier to spot rogue genes linked to disease, says Graziella Persico, who

  is heading the team.

 

  Similar scrutinies are taking place on the Italian island of Sardinia,

  where a gene data bank of 4,000 people from the villages of Perdasdefogu

  and Talana is being compiled, and in Iceland, which agonized over ethical

  and privacy concerns before handing over the entire population's medical

  records to the American company DeCode Genetics.

 

  Gene testing and discrimination

  It's not only isolated villagers who will have their genes examined.

  Already health insurance companies in some cases require information on

  possible genetic defects, and fears are mounting that this will lead to

  discrimination, or higher premiums, for those with deficiencies. The

  situation was explained the Oct. 24 issue of Wired Magazine.

 

  Although federal and state laws in America prohibit group insurers from

  discriminating against patients based on any test, including genetic tests,

  a study published in the American Journal of Human Genetics found that the

  worry of genetic discrimination is very real.

 

  According to Wired, out of 34 genetic counselors and patient advocate

  groups questioned, the great majority said they believe that discrimination

  by health insurers is widespread and common. Mark Hall, a professor of law

  and public health at Wake Forest University, headed the study.

 

  The National Institutes of Health agrees that this fear is not unfounded.

  "Too many Americans fear that their genetic information will be used to

  discriminate against them and too often they are right," reads an NIH

  report on the topic.

 

  Meanwhile, in England, The Independent reported Oct. 11 that genetic

  testing by insurance companies is to be sanctioned. The government's

  advisory body on insurance and genetics decided to approve the use of DNA

  samples to assess whether a person will inherit the degenerative

  Huntington's disease.

 

  The newspaper judged that this approval would begin a string of

  applications by the insurance industry to use genetic tests for inherited

  diseases, including breast cancer. The fear is that in the future, people

  who have had a DNA test for diseases, and who refuse to disclose it to an

  insurance company, could render their coverage null and void.

 

  Most countries are likely to follow Britain's lead, and allow insurers to

  take account of genetic tests, according to the Oct. 21-27 edition of The

  Economist. "If the information is out there, it will eventually be used,"

  says David Schiff at Schiff's Insurance, a trade publication. But

  compulsory disclosure of test results will also cause enormous changes in

  the insurance industry.

 

  Insurance is based on the notion that it makes sense to pool risk.

  Companies rely on the fact that, on average, the payouts to the

  unexpectedly unhealthy policyholders will be offset by unnecessary premiums

  paid by the healthy. In an uncertain world, individuals are happy to go

  along with this and pool their risk with others.

 

  Genetic testing, however, promises substantially to reduce the degree of

  uncertainty. The genetically best-off will choose not to pool their risk

  with others, the worst-off will find that they have become uninsurable, and

  the insurance market will shrink.

 

  This, suggests The Economist, may lead governments to provide a safety net

  of some kind for those at high risk. Indeed, genetic testing may become the

  most potent argument for state-financed universal health care.

 

  Genetic engineering

  In the area of reproduction the possible changes due to developments in

  genetic technology promise to be still more radical. The British paper

  Daily Express on Oct. 25 quoted an American scientist, Greg Stock of the

  University of California, as saying that the "messy business" of

  procreation will, in the richest parts of the world, be consigned to

  history as humans take control of their evolution and turn instead to the

  creation of "designer babies."

 

  Addressing the world's largest ever gathering of fertility experts, in San

  Diego, professor Stock predicted that a number of new technologies would

  mean that parents wishing to have children will turn to science rather than

  letting nature take its course. He said that several technologies --

  including conventional in vitro fertilization treatment, pre-implantation

  genetic screening, and a forthcoming technique which will allow women to

  produce thousands of eggs to store for later use -- would revolutionize

  reproduction.

 

  Genetic screening to reduce the chances of having a baby with diseases such

  as cystic fibrosis, for example, will be widened in scope as more genes are

  identified.

 

  "We will, in essence, be able to take a single cell from an embryo in the

  lab and calculate from that how the child will develop," Stock explained.

  "Effectively, the child will have to pass a test before it is even born.

  Eventually it will be thought as reckless to have a child without genetic

  screening as to have a child without prenatal screening, as happens today."

 

  Most controversially, Stock advocated a technique called "germ-line

  manipulation." Conventional genetic therapies involve altering the genes in

  the body of an individual. Germ-line engineering means altering the genes

  in the individual's sex cells as well, meaning the new genes are passed on

  to future generations.

 

  Fortunately other scientists are not in favor of tampering with our genetic

  heritage. The American Association for the Advancement of Science warned

  against attempting to change genes and trying to create future generations

  of perfect human beings, the Associated Press reported Sept. 19. According

  to Dr. Theodore Friedmann of the University of California, San Diego, the

  method of "inheritable genetic modification,'' or IGM, "is not safe for

  humans."

 

  He said experiments have produced animals born with major birth defects,

  gross physical distortions and fatal abnormalities. The same thing, he

  said, could happen in humans if the current IGM technology were applied.

 

  Scientists are also working on ways to avoid passing on genetic changes to

  future generations. An Oct. 29 report in The Age newspaper of Australia

  says a mechanism has been developed whereby a gene engineered into a germ

  line can be "turned off" so it is not transmitted to offspring.

 

  The CRE/lox system, as it is known, was developed by researcher Mario

  Capecchi at the University of Utah, who has successfully demonstrated it in

  mice. Along with the genes he wishes to insert, Capecchi also incorporates

  into his mice additional DNA-based control sequences that, when triggered,

  act to delete the added genes from the germ cells.

  ZE00111121

 

 


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