a. Articles
Roberts, Leslie. 1989. Rifkin battles gene transfer experiment. Science. 243(4892):734

Thompson, Larry. 1992. Monkey tests spark safety review (gene therapy). Science. 257(5078):1854

Boyles, Salynn; Sandra W. Key. 1999. Fears of gene therapy DNA passed to next generation
statistically unfounded. Antiviral Weekly, June 28,1999, p12

Korenberg, Julie R.; David L. Rimoin. 1995. Medical genetics. JAMA. 273(21):1692
Abstract: The gene for breast and ovarian cancer, BRCA1, was isolated in 1994,
and about 40 mutations have been identified. Genetic research is expanding to
include coronary artery diseases, mental illness and diabetes. Medical geneticists
can help high-risk families of cystic fibrosis in prevention and treatment. An attempt
has been made to move the cystic fibrosis gene to the lower airways of CF
patients. The Human Genome Project is aiding in the early diagnosis of genetic
defects. Polymerase chain reaction amplification of DNA coupled with in vitro
fertilization has made possible the implantation of an embryo in the uterus after
being screened for single-gene disorder.

Morgenthaler, Lissa. 1993. Just what the doctor ordered: gene therapy is now stuff of dollars, not just dreams. Barron's. 73(38):10
Brief Summary: Biotechnology companies such as Cell Genesys, Genzyme and
SyStemix will likely profit from the advances made from the use of gene therapy. Innovations, research efforts and products by companies are presented as examples that will help raise profits.

Wheeler, David L. 1991. Debate begins over who should pay for experimental gene therapy. The Chronicle of Higher Education. 37(22):A7

Begley, Sharon. 1998. Into the Gene Pool. (ethical aspects of genetic research) Newsweek, Dec 28, 1998 p68(1)
Abstract: Genetic research has given humans a rather disturbing view of
themselves. Sexual behavior and cancer are thought to be determined by a
person's genetic makeup and the possibility that many other facets of a person's intelligence and personality are genetically determined can affect people. Cloning of animals, the possibility of farming human organs and manipulating the genes of unborn humans increases the ethical burden that this science has imposed upon us.

McCormick, Louis H. ; Bruce R. Korf. Nov.1998. Editorial: genetics In medicine: the future is here. Patient Care. p7
Abstract: Many breakthroughs in genetic therapy in the last few years. Research on the Genome has revealed some of the intricate workings of genetics in the human body. Genetic research will change medicine by allowing doctors to understand who has genetic predispositions for disease and some genetic disorders will be able to be treated.

Anderson, W. French. 1995. Gene therapy. Scientific American. 273(3):124
Abstract: Human gene therapy may be controversial but it has managed to save the lives of many individuals. A brief overview of current gene therapy techniques and the potential technologies of the future is presented.

Marx, Jean L. 1986. Gene therapy - so near and yet so far away. Science. 232:824

Gene research stirs hope. 1985. U.S. News & World Report. 99:112

Vogel, Gretchen. 1997. From science fiction to ethics quandary. Science. 277(5333):1753 use of gene therapy in the enhancement of desired traits

Schmeck, Harold M. Jr. 1991. Gene transfer in perspective. FDA Consumer. 25(10):16
Advances in organ transplants and medical science have led to the use of gene therapy. Gene therapy was attempted in 1970 and refined in 1980. A brief history of gene therapy research is presented.

Marshall, Eliot. 1996. Varmus proposes to scrap the RAC. Science. 272(5264):945
Varmus announced that the practice of submitting each new gene
therapy trial to public review has served its purpose, and that the Recombinant DNA Advisory Committee will be dissolved. He also proposed regular NIH workshops on gene therapy. Critics of the plan will have 15 days for discussion.

Marshall, Eliot. 1994. One less hoop for gene therapy. Science. 265(5172):599
The National Institutes of Health (NIH) and the Food and Drug
Administration (FDA) have decreased restrictions on gene therapy research. Prior to the easing, all gene therapy research was subject to public hearings. Under the new plan, the NIH or FDA would only step in if major new policy or safety issues were involved in a research program.

David A. Kessler; Jay P. Siegel;Philip D. Noguchi; Kathryn C. Zoon; Karyn L. Feiden; Janet Woodcock. 1993. Regulation of somatic-cell therapy and gene therapy by the Food and Drug Administration. The New England Journal of Medicine. 329(16):1169
The Food and Drug Administration (FDA) regulates somatic-cell
therapy and gene therapy. Somatic-cell therapy involves treatment with cells that have been genetically altered outside the body. Gene therapy involves direct administration of genetically altered material using a viral carrier. Scientific advances since the 1980s have enabled testing of these new treatments in patients. The FDA may need to re-evaluate its approach to regulation of new products for somatic-cell and gene therapy. Product development may also be advanced by early discussion between academic and commercial sponsors. Researchers should take into consideration FDA requirements and public health demands in these discussions. Historical precedents already exist for evaluating new forms of biotechnology. A prudent course may be science-based regulation under the statutes that have evolved since the late 1800s.

Palca, Joseph. 1991. Changes ahead for gene therapy review process? Science. 253(5020): 624

The first gene-therapy patient. U.S. News & World Report, Sept 24, 1990 v109 n12 p21(1)

Fackelmann, Kathy A. 1990. Human gene therapy wins crucial victory. Science News. 138(5):68

Weiss, R. 1990. Gene therapists told to do homework. Science News. 137(14):213
using PEG-ADA and gene therapy to treat adenosine deaminase deficiency

Weiss, Rick. 1988. Subcommittee okays human gene transfer. Science News. 134(25):389

Culliton, Barbara J. 1988. Gene therapy OK'd. Science. 242(4875):21
The National Institutes of Health advisory committee on
human gene therapy this week approved an experiment to insert genes into the cells of terminally ill cancer patients in an attempt to measure the effectiveness of treatment. It is the first time NIH adviser have given their blessing to this kind of study. The test, which is expected to be carried out on no more than ten patients who are likely to die within 3 months, will be conducted by Steven A. Rosenberg of the National Cancer Institute and W. French Anderson of the NIH's heart institute.
Rosenberg has pioneered cancer therapy using tumor infiltrating or TIL cells, a
type of white blood cell that shows promise in attacking certain cancers. Using
Anderson's gene therapy expertise, the two physicians plan to attach a gene for the antibiotic neomycin to the TIL cells and use it as a marker to trace the course of TIL cells into tumors. Final pre-test approval must still come from the director of NIH and the Food and Drug Administration.

Culliton, Barbara J. 1986. NIH asked to tighten gene therapy rules. Science. 233:1378

Sun, Marjorie. 1985. Gene therapy guidelines approved. Science. 230:302

Who will judge gene-therapy research? Science News, Aug 31, 1985 v128 p140(1)

Stephenson, Joan. 1999. New Method to Repair Faulty Genes Stirs Interest in Chimeraplasty Technique. JAMA. 281(2):119
Abstract: A Newtown, Pennsylvania biotechnology company is developing a
brand-new approach to gene therapy. Most gene therapy methods insert entire genes into cells to correct a gene mutation. The technique developed by Kimeragen, Inc., is called chimeraplasty, or targeted gene correction. It inserts a small nucleic acid sequence containing the correct sequence in the area around the mutation. It binds to this area and stimulates the cell's own DNA repair mechanism. The mutation is corrected to match the version on the chimeric molecule. This technique is best used for point mutations such as a deletion, insertion, or change in a single base pair.

Stix, Gary. 1998. Shutting down a gene. Scientific American. 279(5):46
Abstract: The US FDA has issued approval for a number of antisense drugs,
which promise to address a number of viral disorders, including AIDS and Crohn's disease. These preparations function by hindering the formation of unwanted proteins by limiting the action of messenger RNA.

L.A. Martin, R. Vile, N.R. Lemoine, K. Sikora, H.S. Pandha. 1997. Genetic prodrug activation therapy. The Lancet. 350(9094):1793

Flam, Faye. 1993. Can DNA mimics improve on the real thing? Science. 262(5140):1647
Researchers at the University of Copenhagen have developed
compounds called peptide nucleic acids (PNA) which mimic DNA and RNA in
diagnostic and therapeutic uses, but last longer and form stronger bonds. The
possible use of PNAs in antisense, a type of gene therapy, is examined.

Morsy, Manal A;Kohnosuke Mitani; Paula Clemens;C. Thomas Caskey.1993. Progress toward human gene therapy. JAMA. 270(19):2338
Abstract: Advances in gene transfer technology since 1944 may soon permit the application of gene therapy to hereditary human diseases. Gene transfer can be accomplished by either in vivo or ex vivo delivery. Ex vivo delivery involves removing cells, genetically altering them and returning them to the individual as in bone marrow transplantation. In vivo delivery uses cellular transport mechanisms or viruses to import genes into target cells. Problems delivering genes into liver cells have hampered efforts to treat hereditary liver diseases. Bone marrow transplant techniques can be used to correct gene defects in blood cells. Gene therapy has been used in cancer patients to boost their immune response to the tumor. Gene therapy can be used to replace the defective gene that causes cystic fibrosis. It may also be useful in the treatment of muscular dystrophy, which is caused by a defect in the gene for the protein dystrophin.

Carey, Joseph. 1985. Genes; goal for gene splicers: to wipe out inherited defects before they do any damage. U.S. News & World Report. 99:56

Tai, Isabella T. ; Anthony M. Sun. 1993. The delivery of gene products by microencapsulated recombinant cells: a new model for gene therapy. JAMA. 270(17):2119

Begley, Sharon. Designer Babies. Newsweek, Nov 9, 1998 p61(1)
Abstract: Scientists are about three years away in 1998 from genetically altering a fertilized egg. The idea is to cure deadly diseases before the baby is even born through gene therapy. The ethical and moral implications of so altering human beings are considered.

Donegan, Craig. 1995. Gene therapy's future: have scientists gone too far too fast? CQ Researcher. 5(46):1091
Abstract: Gene therapy is a controversial topic because opponents are concerned about the ethics of patenting DNA and genetically engineered animals while others are worried about rushed human trials. Biotechnology firms are being pressured by investors and commercial interests to produce results when the research and development process can take 10 years. Government oversight is both too lax and involves duplicate efforts that delay research. Genetic engineering has important potential but ethical and oversight issues need to be addressed before human trials are approved.
Miller, Henry I. 1994. Gene therapy for enhancement. The Lancet. 344(8918):316
Abstract: Somatic-cell human gene therapy (SHGT) presents medical and ethical concerns that must be considered in relation to people's desires and what society allows. SHGT is the insertion of genes into the cells of human subjects to correct conditions present at birth or acquired later in life. Debate and controversy surround this technological advance. Some experts support use of SHGT for disease treatment but not for the enhancement of physical appearance. This argument cites moral and medical safety issues. Medical risks of SHGT, however, may not be different from other types of medical procedures and can likely be monitored. SHGT used for physical enhancement should not be subjected to more stringent controls than other therapies with similar goals such as appetite suppressants and hair growth stimulators. The issues raised by SHGT are not unique. They warrant the same consideration that is given to other medical interventions.

Voelker, Rebecca. 1993. The genetic revolution: despite perfection of elegant techniques, ethical answers still elusive. JAMA. 270(19):2273
Abstract: The rise of novel genetic technologies has initiated several debates
regarding the appropriate and ethical use of gene therapy. Gene therapy studies should be carefully designed, be stringently reviewed and include an extensive informed consent process. At this time, the American Society of Human Genetics discourages genetic screening of patients without a family history of disease. Genetic testing will allow early diagnosis and treatment of disease. However, it may have widespread consequences such as needless mental pain, discrimination and stigmatization due to genetic diagnoses that never developed into actual diseases. Physicians will be forced to determine whether or not to give out patient information to relatives who may be affected by similar genetic diseases. In addition, training of health counselors, medical students and doctors should include genetic counseling techniques.

Wivel, Nelson A. ; LeRoy Walters. 1993. Germ-line gene modification and disease prevention: some medical and ethical perspectives. Science. 262(5133):533
Abstract: There has been considerable debate about the ethics of human germ-line gene modification. As a result of recent advances in the micromanipulation of embryos and the laboratory development of transgenic mice, a lively discussion has begun concerning both the technical feasibility and the ethical acceptability of human germ-line modification for the prevention of serious disease. This article summarizes some of the recent research on germ-line gene modification in animal models. Certain monogenic deficiency diseases that ultimately might be candidates for correction by germ-line intervention are identified. Several of the most frequently considered ethical issues relative to human germ-line gene modification are considered in the context of professional ethics, parental responsibility, and
public policy. Finally, it is suggested that there is merit in continuing the discussion about human germ-line intervention, so that this technique can be carefully compared with alternative strategies for preventing genetic disease.

Ward, Darrell E. 1993. Gene therapy: the splice of life. USA Today. 121(2572):63
Advances in the ability to manipulate genes presents a variety of
ethical and social questions. Gene therapy could be used to improve the quality of life, but it could also have a variety of negative effects such as contributing to the devaluation of the handicapped.

Roberts, Leslie. 1989. Ethical questions haunt new genetic technologies. Science. 243(4895): 1134.

Culliton, Barbara J. 1984. Congress reports on gene therapy. Science. 226:1404
Office of Technology Assessment report

Jaroff, Leon. 1999. Success Stories: The verdict on the pioneering children of gene therapy: so far, so good. Time. 153(1):72
Ashanthi DeSilva was first recipient of successful gene therapy

Mahato RI; Smith LC; Rolland A. 1999. Pharmaceutical perspectives of nonviral gene therapy.
Advances in Genetics. 41:95-156.

Zanjani ED; Anderson WF. 1999. Review: Medicine - Prospects for in utero human gene therapy. Science. 285(5436):2084-2088
Abstract: Gene therapy for the treatment of disease in children and adults is being actively pursued at many medical centers. However, a number of genetic disorders result in irreversible damage to the fetus before birth. In these cases, as well as for those with genetic diseases who may benefit from therapy before symptoms are manifested, in utero gene therapy (IUGT) could be beneficial. Although some successes with in utero gene transfer have been reported in animals, significant questions remain to be answered before IUGT clinical trials would be acceptable. This review analyzes the state of the art and delineates the studies that still need to be performed before it would be appropriate to consider human IUGT.

Zelenin AV; Kaigorodov VA; Prasolov VS. 1998. Gene therapy today and tomorrow.
Molecular Biology. 32(2): 188-196.
Abstract: Gene therapy is an approach to curing diseases based on delivering genetic constructs into the patient's organism. The curative effect is due either to expression of the inserted gene or to partial or complete inhibition of a "sick" or overexpressed gene function. Born in mid-80s at the junction of biology and medicine, gene therapy becomes more and more widespread and deserves the right to be considered the medicine of the XXI century. Although the practical medical achievements of gene therapy are yet extremely modest, and it is early to speak about at least a single case of complete healing by such treatment, the extensive studies in all leading countries of the world with generous financial support allow one to expect a quick breakthrough of the gene therapy technologies into medical practice. The review deals with the basic genetic constructs used in gene therapy, the ways of their delivery into the cells and tissues, as well as with the most important routes of their possible application in medicine. The problems of genetic safety and the ethical aspects of gene therapy are discussed.
Anderson, WF. 1998. Human gene therapy. Nature. 392: (6679) 25-30, Suppl. S
Abstract: Although gene therapy as a treatment for disease holds great promise, progress in developing effective clinical protocols has been slow. The problem lies in the development of safe and efficient gene-delivery systems. This review will evaluate the problems and the potential solutions in this new field of medicine.

Hart IR. 1996. Transcriptionally targeted gene therapy. Current Topics in Microbiology and
Immunology. 213:19-25.

Kohn DB; Parkman R. 1997. Gene therapy for newborns. FASEB Journal. 11(8):635-639.
Abstract: Application of gene therapy to treat genetic and infectious diseases may have several advantages if performed in newborns. Because of the minimal adverse effect of the underlying disease on cells of the newborn, the relatively small size of infants, and the large amount of future growth, gene therapy may be more successful in newborns than in older children or adults. The presence of umbilical cord blood from newborns provides a unique and susceptible target for the genetic modification of hematopoietic stem cells. In our first trial of gene therapy in newborns, we inserted a normal adenosine deaminase gene into umbilical cord blood cells of three neonates with a congenital immune deficiency. The trial demonstrated the successful transduction and engraftment of stem cells, which continue to contribute to leukocyte production more than 3 years later. A similar approach may be taken to insert genes that inhibit replication of HIV-1 into umbilical cord blood cells of HIV-1-infected neonates. Many other metabolic and infectious disorders could be treated by gene therapy during the neonatal period if prenatal diagnoses are made and the appropriate techical and regulatory requirements have been met.

Debabov VG. 1997. DNA vaccination and gene therapy based on transient expression of nucleic acids in human and animal somatic cells. Molecular Biology. 31(2):172-177
Abstract: DNA of plasmids and viruses deficient in replication in animal and human cells is preserved in the cell for a long time without being integrated in the genome, and governs synthesis of the encoded proteins for weeks and months. The same applies to RNA-containing viruses. Such prolonged transient expression combined with improved techniques of DNA and RNA transfer to animal and human cells and organs in vivo become the basis for gene therapy and new-generation vaccines.

Cohen Haguenauer O . 1997. Gene therapy: Regulatory issues and international approaches to regulation. Current Opinion in Biotechnology. 8(3):361-369.

Bank A. 1996. Human somatic cell gene therapy. Bioessays. 18(12):999-1007
Abstract: The prelude to successful human somatic gene therapy, i.e. the efficient transfer and expression of a variety of human genes into target cells, has already been accomplished in several systems. Safe methods have been devised to do this using non-viral and viral vectors. Potentially therapeutic genes have been transferred into many accessible cell types, including hematopoietic cells, hepatocytes and cancer cells, in several different approaches to ex vivo gene therapy. Successful in vivo gene therapy requires improvements in tissue-targeting and new vector design, which are already being sought. Gene-transfer protocols have been approved for human use in inherited diseases, cancer and acquired disorders. Although the results of these trials to date have been somewhat disappointing, human somatic cell gene therapy promises to be an effective addition to the arsenal of approaches to the therapy of many human diseases in the 21st century if not sooner.

Morrison SJ; Uchida N; Weissman IL. 1995. The biology of hematopoietic stem cells. Annaul Review of Cell and Developmental Biology. 11:35-71.
Abstract: Hematopoietic stem cells (HSC) are the only cells in the blood-forming tissues that can give rise to all blood cell types and that can self-renew to produce more HSC. In mouse and human, HSC represent up to 0.05% of cells in the bone marrow. HSC are almost entirely responsible for the radioprotective and short- and long-term reconstituting effects observed after bone marrow transplantation. The subsets of HSC that give rise to short-term vs long-term multilineage reconstitution can be separated by phenotype, demonstrating that the fates of HSC are intrinsically determined. Here we review the ontogeny and biology of HSC, their expression of fate-determining genes, and the clinical importance of HSC for transplantation and gene therapy.

L edley FD. 1995. After gene-therapy ­ issues in long-term clinical follow-up and care.
Advances in Genetics. 32:1-16.

b. Books
Lyon, Jeff. Altered fates : gene therapy and the retooling of human life. New York : Norton, c1995

Rudolph, Frederick B. and Larry V. McIntire,eds. Biotechnology : science, engineering, and ethical challenges for the twenty-first century. Washington, D.C. : Joseph Henry Press, 1996

Kevles, Daniel J. and Leroy Hood, eds. The Code of codes : scientific and social issues in the Human Genome Project. Cambridge, Mass. : Harvard University Press, 1992

Thompson, Larry. Correcting the code : inventing the genetic cure for the human body. New York : Simon & Schuster, c1994

Lee, Thomas F. Gene future : the promise and perils of the new biology. New York : Plenum, c1993

Annas, George J. and Sherman Elias, eds. Gene mapping : using law and ethics as guides.
New York : Oxford University Press, 1992

Bishop, Jerry E. Genome : the story of the most astonishing scientific adventure of our time--the attempt to map all the genes in the human body. New York, N.Y. : Simon & Schuster, c1990

Murray, Thomas H. , Mark A. Rothstein, and Robert F. Murray, Jr, eds. The Human Genome Project and the future of health care. Bloomington : Indiana University Press, c1996

Human gene therapy. Washington, D.C. : Congress of the United States, Office of Technology Assessment, 1984

Nichols, Eve K. Human gene therapy. Cambridge, Mass. : Harvard University Press, 1988
(RB155.8 .N53 1988)

Leder, Philip, David A. Clayton, Edward Rubenstein, eds. Scientific American introduction to molecular medicine. New York, NY : Scientific American, c1994. (RB155 .S36 1994)

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c. Websites
www.mc.vanderbilt.edu/gcrc/gene/inttext.htm
A comprehensive list of sites about gene therapy, antisense technology, virology, pharmacokinetics, and vectors, even DNA testing.

www.mc.vanderbilt.edu/gcrc/gene/index.html
Above site is from here, a course site that includes lecture materials, background information, and references.

www.cbt.ki.se/ewgt/HomePage/Index.html
European Working Group on Human Gene Transfer and Therapy Organizational information

www.stockton-press.co.uk/gt/
Gene Therapy, Monthly journal, available full-text, (PDF).

www.genemed.org
Gene Med Network. Self-described "hub site for the 21st century molecular medicine." Resource center for gene-related web sites. Special listings for journals, articles, and clinical trials.

www.natx.com
Genebrowser: The Biotechnology & Gene Therapy Web 'Cite'. Comprehensive list of gene and gene therapy related websites, sponsored by Nature Technology Corporation.

www.med.upenn.edu/ihgt/index.html
The Institute for Human Gene Therapy University of Pennsylvania site; information library and seminar listings. An explanation of gene therapy and its' prospects, seminars, events, news, educational programs, and other areas. Providing a foundation for basic research necessary to
assure the success of human gene therapy.

www.wiley.co.uk/genetherapy/
Journal of Gene Medicine. Journal website includes online articles as well as "preprints" (original articles and reviews posted after editorial approval but before publication in print), and a database of ongoing and published clinical trials.

cancernet.nci.nih.gov/clinpdq/therapy/Questions_and_Answers_About_Gene_Therapy.html
NCI Cancer Facts: Questions and Answers About Gene Therapy FAQ oriented toward patient
information.

www.library.utoronto.ca/medicine/gene-therapy/default.htm
Toronto Gene Therapy Network University of Toronto information site, with emphasis on clinical trials and abstracts.

www.med.upenn.edu/bioethic/webget
WebGET: Web Genetics and Ethics Resource Project University of Pennsylvania database on regulations, laws, policies, and ethics.

www.asgt.org
Official site for the American Society of Gene Therapy (ASGT). Meet members of committees addressing ethics, publications, and regulations. Works on treating AIDS, cancer, and neuromuscular disorders.

www.pitt.edu/~rsup/phgt/
Pittsburgh Human Gene Therapy Center. The mission of the Center is to foster the growth and development of multidisciplinary preclinical and clinical research programs aimed at the use of genetransfer technologies to treat human diseases. Look over the core labs, pilot studies, and training programs.

www.newsfile.com/x1g.htm
Gene Therapy Weekly. Weekly newspaper provides a factsheet, events calendar, and archive of articles.

www.wnet.org/archive/innovation/index.html
Innovation: Cracking the Code. Webpages for a WNET public television series on advances in biotechnology. Includes two pages on gene therapy and related developments, a glossary, and an elegant animated Gene Therapy Primer on how viruses are used to introduce therapeutic genes to
target cells. [Animation requires the Shockwave Flash plug-in.]

www.dnafiles.org/home.html
a radio journey through the world of genetics.The DNA Files Is Our Fate In Our Genes? Including: the human genome project: Mapping the Future; Gene Therapy: Medicine for Your Genes; DNA & Behavior: Is Our Fate in Our Genes?; Genetics & Biotechnology: DNA in the Marketplace; Prenatal Genetic Testing: Do You Really Want to Know Your Baby's Future?; Predictive Genetic Testing: Do You Really Want to Know Your Future?; Law & the Genetics of Identity: The Science of DNA Fingerprinting; The Genetics of Human Evolution: Where Did We Come From? Where Did We Go?; Plants, animals, & transgenics: A Tomato By Any Other Name.

piebald.princeton.edu/mb427/1997/students/therapy/main.html
Applying genomics to disease and therapy. Overview, Mouse Genomics, Viral Vectors for Gene Delivery, Cystic Fibrosis as an Example, Ethical Issues

www.biol.tsukuba.ac.jp/~macer/NBBGT.html
A huge list of gene therapy and genetics resources from 1994-1999 including technical journals, religious journals, other journals, book reviews. Not highly organized.

www.gene.com/AE/AB/IWT/Gene_Therapy_Overview.html

health.phillynews.com/encyclopedia/edpicks/gene
A series of articles on IHGT from 1995-1996, including therapies for blindness, cancer, and cystic fibrosis.

www.med.upenn.edu/~bioethic/genetics/articles.html
Articles on the ethics of genetic engineering and comments on them. From the philosophical to more practical.

www.mayohealth.org/mayo/9908/htm/genether.htm
"Gene Therapy: a bright future" an article about SCID-ADA treatment in 1990 and potential applications. Links to articles about the human genome project, transgenic mice, and gene therapy for pain.

www.nih.gov/od/orda/panelrep.htm
Report and recommendations of the panel to assess the NIH investment in research on gene therapy. December 7, 1995.

http://www.bifrost.is/greinSveins07.html
Sveinn Ólafsson. Genetic information in Iceland.
An article published in the Scandinavian Public Library Quarterly in 1999.
This article describes the foundation of a nationwide health database in Iceland. The
database was established with an Act, which took force on January 1st, 1999. The idea for
this database came from deCODE, a company that proposes to make use of the homogenity
and the vast genealogical information of the Icelandic nation to develop better drugs for
common diseases. The company is a genomics research company, and is currently working
with Hoffmann La-Roche. It will gain a 12-year monopoly on building such a database. The
formation of the database brings up ethical questions, and new possibilities for health
management, as well as a promise of better cure and more potent drugs for all.

http://genetics.about.com/education/genetics/?REDIR_404=yes
About.com Guide to: Genetics

www.seattletimes.com/news/nation-world/html98/altgene_011299.html
Schwartz, John. Tuesday, January 12, 1999. Iceland sells its people's genetic code to biotech
firm. Washington Post.
Iceland has decided to become the first country in the world to sell the rights to the entire population's genetic code to a biotechnology company -- a move that is highlighting the promise and risks of the genetic information age.

web-cr02.pbs.org/saf/3_ask/archive/qna/3283_kstefansson.html
Iceland Genes -- Kari Stefansson
DeCode Genetics studies the unique genetic heritage of Iceland's population. What makes Icelanders unique -- and what does the company hope to find? To learn more, read answers about this topic from deCode Genetics president, Kari Stefansson.

www.decode.is
Company website. Click on English version.

www.mannvernd.is/english/
Association of Icelanders for Ethics in Science and Medicine. Welcome to the home page of MANNVERND the organized opposition to the Icelandic government's Act on a Health Sector Database (HSD).

members.tripod.com/ca916/index-8.html
Legislation in Iceland, passed on December 17. 1998, has given a private company permission to build a central database of health records for the entire nation. The legislation, which has been very controversial, poses some important ethical and legal issues that are not unique to Iceland.

genetics.nature.com/web_specials/editorial_1098/
Article from Nature Genetics about deCode.

euler.ntu.ac.uk/lsstaff/rect1.html
Palmer, Trevor. Rectifying God's Mistakes? The Diagnosis and Treatment of Inherited Disorders. Based on an Inaugural Professorial Lecture and Fourth Gerald Leadbeater Memorial Lecture, given January 1991.
Abstract:
For many years, chromatographic techniques have played an important role in the diagnosis of inborn errors of metabolism. Quantitative amino acid analysis of a physiological specimen can be carried out in a few hours by ion exchange chromatography, and in an even shorter period of time by reversed-phase chromatography, though without achieving the same degree of separation. Despite their diagnostic value, such techniques provide no information about the precise nature of the genetic mutation responsible for the disorder, but gene structure may now be investigated directly by the use of restriction endonucleases and Southern blotting procedures, or by sequencing following amplification by the polymerase chain reaction. DNA technology allows precise diagnosis within a family, once characteristics have been determined; however, because of genetic heterogeneity, findings in one family cannot be assumed to apply to an unrelated family.
Dietary therapy has proved very effective in relieving symptoms in some inborn errors, such as phenylketonuria, but not in others. Even when effective, strict dietary therapy has to be maintained for years, if not for life. Enzyme replacement therapy offers a more fundamental approach to the treatment of inherited metabolic disease; various forms have been used in the attempted treatment of, for example, lysosomal storage disorders, but only bone marrow transplantation has been effective. An even more fundamental approach is gene therapy, in which a normal human gene may be introduced by means of a retrovirus or other vector into cells where that gene is defective. Ethical concerns about gene therapy have been addressed, and the first trials started.

www.washingtonpost.com/wp-dyn/articles/A28238-1999Dec7.html
Weiss, Rick and Deborah Nelson. "Methods faulted in fatal gene therapy." Washington Post.
Dec. 8,1999, p. A1.

washingtonpost.com/wp-srv/WPlate/1999-12/09/210l-120999-idx.html
Weiss, Rick and Deborah Nelson. "Gene Researcher Defends Test on Teen." Washington Post.
December 9, 1999, p. A06

washingtonpost.com/wp-srv/WPlate/1999-12/10/108l-121099-idx.html
Weiss, Rick and Deborah Nelson. "Gene Researchers Apologize for Lapses in Teen's Fatal
Treatment." Washington Post. December 10, 1999, p. A06
During yet another day of new revelations of problems in a fatal University of
Pennsylvania gene therapy experiment, researchers apologized for their lapses while
parents of sick children pleaded with federal regulators not to slow the pace of research
on inherited diseases.

www.washingtonpost.com/wp-dyn/health/A43131-1999Dec10.html
Weiss, Rick. "Gene Therapy Firms Resist Publicity." Washington Post. December 11, 1999, p.
A2
Federal officials overseeing the field of gene therapy searched in vain yesterday for
common ground between drug companies that want to keep the details of their
experiments secret and advocates who favor a more open airing of the field's recently
revealed problems.

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