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Legal and Ethical Issues

The success of the Human Genome Project in revealing the genetic blueprint for human life raises many ethical questions. For example, who has the right to access each person's genetic information? How can we keep our own genetic information private, while also benefiting from medical advances? Will some people have "designer babies"?

 

Genetic Testing Case Settled This news article from an online magazine is an example of both ethical and scientific misuse of genetic testing. A company secretly tested employees for a gene associated with carpal tunnel syndrome. However, carpal tunnel syndrome is not a genetic disease, and the testing was alleged to be for avoiding payment of insurance claims.
 
Genetics Privacy and Legislation The Human Genome Project's web site (funded by US Dept. of Energy) provides this detailed description of the US Federal and State laws and policies on genetic testing and discrimination. Clear and concise, though somewhat technical; includes links to Congressional hearings.
 
Negotiating Gene Science Ethics Online magazine article about ethical issues resulting from the sequencing of the human genome. The article addresses issues such as "Who Owns Your Genes? " and "Your Genes Are Not an Excuse."
 
Doctors Face Genetics Test Article from the online magazine www. wired.com. When should doctors advise patients to take a genetic test? In future they might be sued for genetic malpractise, but until there is a precedent, lawyers are likely to stick to cases with larger awards.
 
Fear of a Genetic Underclass Article on the lycos website "wired news". Individuals with positive results in genetic testing may face discrimination. People try to keep results of genetic testing secret in order not to be excluded from health insurance plans.
 
Eugenics Webpage by Cold Spring Harbor Labs dealing with the role the institute played in eugenics. The page shows the social and scientific origins of eugenics as well as the social impacts like marriage laws or race discrimination.
 
Basics of DNA fingerprinting This web page about DNA fingerprinting in forensics was designed by students at the University of Washington. Starting from basics on DNA structure, you will find information on the techniques for and applications of DNA fingerprinting forensic science.
 
Cloning Various articles about the issue of cloning. Page at about.com contains a variety of links covering a wide range of aspects to the topic. The page answers common questions about methods of cloning, describes the process of cloning the sheep 'Dolly' and provides links on ethical issues especially in terms of cloning humans and stem cell research.
 
Study Raises Human Cloning Doubts Defects in the development of cloned mice confirm that the method used to clone "Dolly" should not be applied to humans. While the genetic information is correct, even slight changes in the conditions during cloning experiments can change the expression of genes and result in abnormal tissues and organs.
 
Forensic Science General information on various aspects of forensic science including a section on DNA fingerprinting.
 
Use of DNA in Identification How can DNA fingerprinting be used in identification of missing people? A talk given by the director of the MIT center for genome research in 1992.
 
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Medical Issues
Medicine and the New Genetics This government-run web page of the human genome project describes influences of the project on diagnosis of and therapy for diseases. The page also provides a list of links, publications and book reviews.
 
"Spelling errors" in the DNA code Article from Incyte Genomics Inc. on types of mutations, with a special focus on single nucleotide polymorphisms (SNPs), the smallest possible changes in the genetic code. SNPs do not always cause diseases, but account for the differences between two human beings or the efficiency of response to certain drugs.
 
Gene profiling targets therapy to the tumor Chemotherapy in cancer treatment can be tailored to the patient's needs after genetic testing, thus making therapy more efficient and minimizing side-effects. This article on msnbc.com describes an example of the breast cancer related gene, HER-2 .
 
A step toward designer babies? Article on preimplantation diagnostics, (genetic testing of an embryo before implantation in the womb). A family with a history of a cancer-related gene used this technique; their baby has now been born. Also information about ethical issues and potential abuse of this method.
 
Feat ends worldwide hunt for ‘heart’ gene; millions may benefit
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Mutant Gene Predicts Heart Disease
Websites by accessexcellence.com and msnbc.com that show two different types of mutations that enhance the risk for heart disease. Mutant genes can be used to predict susceptibility to heart disease. People carrying the mutation could be advised to change their diet or to take drugs in order to prevent them from developing the disease. As the example shows there is often more than just one genetic defect that can cause a specific disease. Also having a mutation sometimes just increases the susceptibility for a disease and plus environmental factors have an impact.
 
Genetics to put the bite on the mozzie Susceptibility to mosquito bites is most likely due to genetics. Example of a study comparing identical twins with non-related people.
 
Genetic flaw promotes colon cancer
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Genetic health page on colon cancer

Colon cancer is shown as an example of a disease with a genetic background. Genetic testing could provide the possibility to start a therapy at a stage when the disease can still be cured. The page is part of the website www.genetichealth.com, run by a provider of online genetic health management systems, which provides information about some genetic diseases and general information about genetic testing, genetic counseling and related ethical issues.
 
Breaking the Code of Color This page provides information about the processes involved in seeing, hearing and smelling as well as related genetic diseases. On the example of color blindness you can get an impression of the term X-chromosome linked disorder.
 
Nature or nurture? Now that the relatively small number of human genes is known, it seems more likely that environmental factors have more impact on the development of humans than expected. Craig Venter, CEO of Celera genomics, claims that cloned individuals will never be exact copies.
 
Math Smarts: Nurture Not Nature Article that views human brains as genetically equal-- math skills are not the result of an inborn math ability.
 
DNA Fingerprinting in Human Health and Society Short summary of DNA fingerprinting including applications in medicine.
 
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DNA & the Past
Is it True? Did Thomas Jefferson really father children with Sally Hemmings?
 
Deciphering Disease in Ancient Mummies
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Extracting Mummy DNA Examples for DNA technology in archaeology. Diseases and relationships among pharaohs are analyzed using genetic methods. Scientist are facing special problems since the biological samples taken from the mummies are thousands of years old. Only pieces of DNA can be recovered since it is a very fragile molecule.
 
Genetics and DNA technology
Gene Therapy The page on the website of the Human Genome Project shows which methods are used in gene therapy. You can learn about achievements and problems scientists are facing when they try to cure diseases using gene therapy. The webpage includes a section on ethical issues as well as a collection of links for further information.
 
Human Genome Project History, achievements and news of the Human Genome Project.
 
Cloning Genes What is cloning? This web page provides information about one meaning of the expression "cloning": cutting and pasting DNA.
 
Polymerase Chain Reaction - Xeroxing DNA In many cases only small amounts of DNA are obtained which are not sufficient for experiments. The PCR technique can be used to copy and amplify a certain DNA sequence using a DNA copying enzyme. This NIH webpage describes process of and the reagents involved in the PCR method.
 
Of Mice and Men This webpage on www.accessexcelence.com, developed by Genentech Inc., shows how mutant ant transgenic mice can be used to do research on human diseases. The page shows some methods used in the experiments and examples including AIDS and cancer.
 
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Future/Technology
Potential Benefits of Human Genome Project Research What are the potential applications now that the human DNA code has been deciphered?
 
Biotechnology This webpage of the Biotechnology Industry Organisation shows methods used in biotechnology, e.g. cell culture(growing cell outside of living organisms, sensors based on biomolecules, and also genetic modification technology. Each part includes a set of applications of the techniques.
 
A Timeline of Biotechnology This web page features many achievements in biotechnology. Ancient discoveries and the recent exponential expansion of the field are of particular interest.
 
Can Science be Stopped?
 
A Simple Guide to DNA Based Computers How can DNA technology be used in future computers and what is possible today?

 
Researchers Build DNA Motor that May Lead to Faster Computer Chips
 
Gene Therapy Gets New Life This article by ABC news who were able to cure children suffering from an immunodeficiency disease. The function of a gene on the X-chromosome was restored by transfering a functional copy of the gene to immune cells. As one of the few positive results of experiments in gene therapy it still remains unclear if the effects will be persisting.
 
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Other Links
What happens when the human genome sequence is completed?
 
Cloning Links Various pages on different aspects of cloning.
 
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