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Towards An Ethics of the Human Genome Project. Pattle P.Pun, Department of Biology, Wheaton College, Wheaton, IL 60187 USA. Human Genome Project. Goals:  ■ identify all the approximate 30,000 genes in human DNA,

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towards an ethics of the human genome project
Towards An Ethics of the Human Genome Project
  • Pattle P.Pun,
  • Department of Biology,
  • Wheaton College,
  • Wheaton, IL 60187
  • USA

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

human genome project
Human Genome Project

Goals: 

■ identify all the approximate 30,000 genes in human DNA,

■ determine the sequences of the 3 billion chemical base pairs that make up human DNA,

■ store this information in databases,

■ improve tools for data analysis,

■ transfer related technologies to the private sector, and

■ address the ethical, legal, and social issues (ELSI) that may arise from the project.

Milestones:

■ 1990: Project initiated as joint effort of U.S. Department of Energy and the National Institutes of Health ■ June 2000: Completion of a working draft of the entire human genome

■ February 2001: Analyses of the working draft are published

■ April 2003: HGP sequencing is completed and Project is declared finished two years ahead of schedule

Timeline: http://www.dnai.org/timeline/index.html

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

U.S. Department of Energy Genome Programs, Genomics and Its Impact on Science and Society, 2003

how does the human genome stack up
How does the human genome stack up?

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

anticipated benefits of genome research
Anticipated Benefits of Genome Research

Molecular Medicine

• improve diagnosis of disease• detect genetic predispositions to disease• create drugs based on molecular information• use gene therapy and control systems as drugs• design “custom drugs” (pharmacogenomics) based on individual genetic profiles

Microbial Genomics

• rapidly detect and treat pathogens (disease-causing microbes) in clinical practice• develop new energy sources (biofuels)• monitor environments to detect pollutants• protect citizenry from biological and chemical warfare• clean up toxic waste safely and efficiently

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

U.S. Department of Energy Genome Programs, Genomics and Its Impact on Science and Society, 2003

anticipated benefits of genome research cont
Anticipated Benefits of Genome Research-cont.

Risk Assessment

• evaluate the health risks faced by individuals who may be exposed to radiation (including low levels in industrial areas) and to cancer-causing chemicals and toxins

Bioarchaeology, Anthropology, Evolution, and Human Migration

• study evolution through germline mutations in lineages• study migration of different population groups based on maternal inheritance• study mutations on the Y chromosome to trace lineage and migration of males• compare breakpoints in the evolution of mutations with ages of populations and historical events

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

U.S. Department of Energy Genome Programs, Genomics and Its Impact on Science and Society, 2003

anticipated benefits of genome research cont7
Anticipated Benefits of Genome Research-cont.

DNA Identification (Forensics)

• identify potential suspects whose DNA may match evidence left at crime scenes• exonerate persons wrongly accused of crimes• identify crime and catastrophe victims• establish paternity and other family relationships• identify endangered and protected species as an aid to wildlife officials (could be used for prosecuting poachers)• detect bacteria and other organisms that may pollute air, water, soil, and food• match organ donors with recipients in transplant programs• determine pedigree for seed or livestock breeds• authenticate consumables such as caviar and wine

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

U.S. Department of Energy Genome Programs, Genomics and Its Impact on Science and Society, 2003

anticipated benefits of genome research cont8
Anticipated Benefits of Genome Research-cont.

Agriculture, Livestock Breeding, and Bioprocessing

• grow disease-, insect-, and drought-resistant crops• breed healthier, more productive, disease-resistant farm animals• grow more nutritious produce• develop biopesticides• incorporate edible vaccines incorporated into food products• develop new environmental cleanup uses for plants like tobacco

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

U.S. Department of Energy Genome Programs, Genomics and Its Impact on Science and Society, 2003

elsi ethical legal and social issues
ELSI: Ethical, Legal, and Social Issues

• Privacy and confidentiality of genetic information.

• Fairness in the use of genetic information by insurers, employers, courts, schools, adoption agencies, and the military, among others.

• Psychological impact, stigmatization, and discrimination due to an individual’s genetic differences.

• Reproductive issues including adequate and informed consent and use of genetic information in reproductive decision making.

• Clinical issues including the education of doctors and other health-service providers, people identified with genetic conditions, and the general public about capabilities, limitations, and social risks; and implementation of standards and quality‑control measures.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

U.S. Department of Energy Genome Programs, Genomics and Its Impact on Science and Society, 2003

elsi issues cont
ELSI Issues (cont.)

• Uncertainties associated with gene tests for susceptibilities and complex conditions (e.g., heart disease, diabetes, and Alzheimer’s disease).

• Fairness in access to advanced genomic technologies.

• Conceptual and philosophical implications regarding human responsibility, free will vs genetic determinism, and concepts of health and disease.

• Health and environmental issues concerning genetically modified (GM) foods and microbes.

• Commercialization of products including property rights (patents, copyrights, and trade secrets) and accessibility of data and materials.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

U.S. Department of Energy Genome Programs, Genomics and Its Impact on Science and Society, 2003

huntington disease hd and cystic fibrosis cf
Huntington Disease (HD)and Cystic Fibrosis (CF)
  • How are HD and CF inherited? What are the patterns of inheritance?
  • What is the cause of HD? Of CF? What’s wrong with the HD or CF genes?
  • What is the predictive reliability of the genetic test that determines whether an individual carries a gene for HD? For CF?

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

what is the clinical course of hd
What is the clinical course of HD?
  • HD is typically a late manifesting autosomal dominant neurodegenerative disorder. It is characterized by motor disturbances, loss of cognitive functions, and psychiatric manifestations. HD patients present with loss of coordination, worsening gait, constant uncontrolled movements (chorea) and personality changes.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide13
After diagnosis, HD patients require medical intervention and as the disease worsens patients invariably require specialized care in long-term nursing facilities. Death comes within 15 years after the initial clinical diagnosis of HD.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

what is the hd gene
What is the HD gene?
  • The HD gene is represented by a segment of DNA (approximately 300,000 letters) found on human chromosome 4.
  • Approximately 3% of the letters of the HD gene are expressed as the HD protein, which has been named huntingtin.
  • Although HD is relatively rare (both inherited and de novo case), every human possesses two alleles of the HD gene.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

what s wrong with the hd gene
What’s wrong with the HD gene?
  • The variant HD alleles which cause HD have a molecular abnormality consisting of an expanding triplet repeat (CAG).
  • The expanding triplet repeat causes extra glutamine amino acids to be placed within the front end of the huntingtin protein, making huntington bigger.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

the genetic test that measures the presence of the hd disease alleles
The genetic test that measures the presence of the HD disease alleles.
  • The original HD test was based on genetic markers that were close to the HD gene. These tests were about 95% reliable (sometimes crossing over would “break” the linkage).
  • The current test is based on the direct assessment of the exact size of the “expanding triplet repeat” region of the HD gene. This is a much more reliable test, more than 99.5% accurate.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

the genetic test that measures the presence of the hd disease alleles17
The genetic test that measures the presence of the HD disease alleles.
  • Alleles of HD which have between 10 and 35 (CAG) repeats never cause HD.
  • Alleles of HD which have more than 40 (CAG) repeats always cause HD.
  • Alleles of HD which have between 36 and 39 (CAG) repeats almost always causes HD.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

clinical diagnosis of cf
Clinical Diagnosis of CF
  • Typical pulmonary manifestations.
  • Typical gastrointestinal manifestations.
  • A history of cystic fibrosis in the immediate family.
  • Sweat chloride concentrations greater than a baseline value.
  • Identification of pathological CFTR mutations on both CFTR alleles.
  • Occasionally, CF is uncovered by a discovery of “male infertility”.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

consequence of cf
Consequence of CF
  • CF patients have greatly shortened life expectancy. The mean age of death now is around 30.
  • There is no cure for cystic fibrosis.
  • Cystic fibrosis is a fatal disease.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

inheritance of cf
Inheritance of CF
  • Cystic Fibrosis is a autosomal recessive disease. It is caused by a single gene defect which is inherited in a autosomal recessive mendelian fashion. Both alleles of the CF gene must be “affected” to be at risk of CF. Having a single allele of the “CF gene” makes the individual a carrier, but does not produce CF.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

identification of the cf gene
Identification of the CF gene
  • The CF gene, now called CFTR, was identified in 1989 by several groups, including Francis Collins, the former director of the NIH Human Genome Institute.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

genotype and phenotype correlation in cf
Genotype and Phenotype correlation in CF
  • Many symptoms are common to all CF patients, such as salty sweat.
  • There is a reasonably good correlation of genotype (particular CF alleles) and pancreatic function.
  • There is little or no correlation of genotype and severity of lung disease or other clinical symptoms. Lack of concordance in twin studies.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

gene therapy for cystic fibrosis
Gene therapy for cystic fibrosis
  • Gene therapy for cystic fibrosis has been evaluated in several human clinical trials.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

behavior is multifactorial
Behavior is Multifactorial

Sin?

Environment

Genes

Development

Behavior

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide25

The Number of Genes Involved in

Particular Behaviors is Unknown

gene 1

environment

gene 6

or

?

gene1

environment

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

gene 100

the advent of genomic medicine
The Advent of Genomic Medicine
  • The science of genomics rests on direct experimental access to the entire human genome and applies to common conditions, such as breast cancer and colorectal cancer, human immunodeficiency virus (HIV) infection, tuberculosis, Parkinson\'s disease, and Alzheimer\'s disease.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

iceland s experiment
Iceland’s experiment
  • 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, deCODE Genetics.
  • Iceland’s parliament has passed a law to allow deCODE to hold an unusual 12-year monopoly on the data marketing rights of her people.
  • The striking uniform DNA of Iceland’s population of 270,000 has provided an invaluable resource for studying human genetics, leading to the discovery of the genetic bases for some hereditary diseases such as Alzheimer’s, Schizophrenia and Osteoporosis.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

case vignette
case vignette :
  • Thirty-four-year-old Kathleen becomes pregnant and sees a new physician for her first prenatal visit.
  • Her medical history is remarkable for an episode of deep venous thrombosis five years earlier while she was taking oral contraceptives;
  • her mother had had deep venous thrombosis when pregnant with Kathleen.
  • Her physician suspects that Kathleen has a hereditary thrombophilia and obtains blood tests to screen for a genetic predisposition to thrombosis.
  • Kathleen proves to be among the approximately 4 percent of Americans who are heterozygous for a mutation in factor V known as factor V Leiden that increases the risk of thrombotic events.
  • On the basis of this knowledge and her history of possibly estrogen-related thromboembolism, she is treated with prophylactic subcutaneous heparin for the balance of her pregnancy. She remains asymptomatic and delivers a healthy, term infant.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide29

The Cypriot ParadigmThe Journal of Medicine and Philosophy     Volume 23, Number 3 / July 1998   Pages:  274 - 287 Geneticization: The Cyprus Paradigm

  • Genetic Testing for Thalassemia for Greek Cypriots:
  • Government and church cooperate in public education, counseling and clinical service.
  • Small, homogeneous population
  • Fairly high living standard
  • High literacy rate.
  • Within One Generation, disease rate fell from 1/1000 births to 0 in 1986.
  • No more reported case as of 1992.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide30
Sustained Correction of X-Linked Severe Combined Immunodeficiency by ex Vivo Gene Therapy, NEJM 346:1185-1193 April 18, 2002
  • Methods
  • CD34+ bone marrow cells from five boys with X-linked severe combined immunodeficiency were transduced ex vivo with the use of a defective retroviral vector. Integration and expression of the c transgene and development of lymphocyte subgroups and their functions were sequentially analyzed over a period of up to 2.5 years after gene transfer.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

sustained correction of x linked severe combined immunodeficiency by ex vivo gene therapy
Sustained Correction of X-Linked Severe Combined Immunodeficiency by ex Vivo Gene Therapy
  • Results
  • No adverse effects resulted from the procedure. Transduced T cells and natural killer cells appeared in the blood of four of the five patients within four months. The numbers and phenotypes of T cells, the repertoire of T-cell receptors, and the in vitro proliferative responses of T cells to several antigens after immunization were nearly normal up to two years after treatment. Thymopoiesis was documented by the presence of naive T cells and T-cell antigen-receptor episomes and the development of a normal-sized thymus gland. The frequency of transduced B cells was low, but serum immunoglobulin levels and antibody production after immunization were sufficient to avoid the need for intravenous immunoglobulin. Correction of the immunodeficiency eradicated established infections and allowed patients to have a normal life.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

the case of jesse gelsinger
The case of Jesse Gelsinger

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide33

The Case (1)Jesse Gelsinger was born with an X-linked recessive error of metabolism, ornithine transcarbamylase deficiency (OTC). This disease causes a life threatening buildup of ammonia. Half of the youngsters born with the disease die within hours of birth. Jesse’s case was relatively mild and was controlled with drugs. Even so, he had experienced one serious episode of coma.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide34

Gelsinger (2)When Jesse turned 18, he volunteered for a gene transfer trial at the University of Pennsylvania. The bioethics committee supervising the trial would not accept affected newborns on the grounds that the parents would be too distraught to provide informed consent. Jesse was jubilant on being accepted. “What’s the worst that can happen to me,” he said. “I die and it’s for the babies.”

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide35

Gelsinger (3)After two lower dosage trials on other volunteers, Jesse was administered the highest dosage level of an adenovirus vector, with the functional OTC gene stitched into it. This vector had already been safely used in over 80 gene therapy trials involving approximately 1,000 patients.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide36

Gelsinger (4)Jesse entered the hospital on September 13, 1999. Seventeen others in the trial had already been treated and suffered only minor aches and pains. However, Jesse soon suffered a high fever. His ammonia levels skyrocketed and eventually he suffered lung failure and brain death.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide37

Gelsinger (5)Doctors later explained that, because of a previous infection, Jesse had had an acute immune reaction to the adenovirus. In the months following his death, FDA and NIH officials identified a host of procedural irregularities and problems that contributed to Jesse’s death.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

safety and consent in gt research lessons of the jesse gelsinger case
Safety and Consent in GT Research: Lessons of the Jesse Gelsinger Case
  • The risks of this research
  • The need for better adverse event reporting and fully informed consent

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide39

Therapy

Enhancement

Somatic

Germ

Line

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

sources of concern
Sources of Concern
  • “Insertional mutagenesis” and the iatrogenic creation of genetic disorders
  • The enduring nature and proliferating potential of such mishaps
  • The low level of need: prenatal and preimplantation selection and egg or sperm donation obviate most Germ Line GeneTherapy

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide41

Can genetic testing be a tool for discrimination by social institutions such as the insurance industry?

  • What is the limitation of genetic technologies?
  • By what criteria can we evaluate the use or misuse of human genetic information?

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide42

How far should one pursue to improve the human conditions by genetic manipulation?

  • How can we prevent the abuse of human genetic information?
  • Does the presence of the genetic defect doom the future of a child\'s life?
  • Do parents have a right not to be subject to genetic testing to alleviate anxiety?

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide43

Are medical professionals obligated to counsel patients in making these decisions?

  • Should employers or insurance companies be given free access to the genetic information of potential employees or clients to determine their employability or set the insurance rates?

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide44

What professional standards should be set for a physician in regards to the amounts and varieties of genetic testing required for his patients by which malpractice litigation can be measured?

  • Does a person have a right not to know about his genetic makeup?
  • Will genetics become a weapon for social discrimination?
  • Should law enforcement agencies promote universal forensic DNA testing to increase the probability of crime control?

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

purdy
Purdy:
  • It can sometimes be immoral to have children when we know (or should know) that our offspring may have a genetic disease.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

jc peterson
JC Peterson:
  • Improvement of our genetic heritage is a reflection of God’s gracious redemption if done properly.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

lewontin and hubbard
Lewontin and Hubbard
  • DNA Testing does not provide practical benefits for the patients to be warranted since no cure for genetic diseases are available.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

wachbroit
Wachbroit
  • Certain professionals have an obligation to know about their genetic condition and thus to be tested genetically. Medical paternalism in regards to deciding whether genetic testing is given to the patients should be restricted.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

1 divine law of aquinas and augustine
1. Divine Law of Aquinas and Augustine
  • The Creator has designed purposes and directions for His creation. This Divine Law can be discovered in Nature. Despite man\'s sinful nature, God still reveals this Law to man through the Scripture and the Church. The Divine Law is consonant with human nature and can be universally applied.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

2 god s steward in his creation
2. God\'s Steward in His Creation:
  • Human\'s participation in creation as a significant part of man\'s stewardship of God\'s creation demands his respect for nature, not his exploitation. Man has to maintain two attitudes in exercising his stewardship of nature: to be grateful towards his Creator, and to be prudent towards managing the creation.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

3 the ethics of virtue
3. The Ethics of Virtue
  • A virtuous person is driven to do good deeds not by the mores of his institutions, but by his own virtuous disposition. The Scriptures define virtuous disposition as the internal desire to be good and to do good, not only based on ones\' education and upbringing, but on the freedom from the bondage of sin and the fruits of the Holy Spirit in a repentant sinner.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

b towards a christian model of ethics what constitute a perfect human being
B. Towards a Christian Model of Ethics: What Constitute a Perfect Human Being?

“Therefore you are perfect, as your heavenly Father is perfect” Mt. 5:48

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide54
Dr. Pattle Pun, Biology, Wheaton College, IL 60187

The concept of a Perfect Human Being as defined by scriptural perspectives should help in the discussion of the ethics of HGP since it defines the essence of what is being human as well as the criteria by which genetic technologies should be applied particularly in relation to man himself.

1 creature of god confined by finitude
1. Creature of God: Confined by Finitude
  • There is a limit within which human intervention to save life can operate since man is doomed to die because of our sin. However, advancement in medical and genetic technologies can ultimately be the instruments that God uses to manifest His work in ameliorating the effects of sin and decay

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

2 created to enjoy and glorify god
2. Created to Enjoy and Glorify God
  • Health can be defined more holistically as "the strength to be human”, not to pursue total fulfillment. The paradox of the evils in the world under the benevolence of the Creator can only be solved in the death and resurrection of Jesus Christ. While eliminating human suffering is a noble cause, there may be a higher purpose for some incurable diseases after all human efforts are exhausted.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

3 made alive by the direct involvement of god
3. Made Alive by the Direct Involvement of God
  • God\'s direct involvement in human life is evident in the act of breathing into the nostrils of man in creation. Genetic engineering of germ cells or the cloning of adult human beings cross the border line of depriving the offspring yet to be born of the freedom to choose the direction of his/her life, a gift uniquely given only by the Creator Himself.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

4 created to be god s steward
4. Created to be God\'s Steward
  • As stewards of God\'s creation, Christians should be the salt and light of the world and actively provide leadership in establishing ethical principles for the HGP, instead of being the obscurantists who oppose technological advance for the sake of tradition.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

5 created in his image divine moral law
5. Created in His Image: Divine Moral Law
  • All human beings are created in the Image of God. Although the Fall depraved man\'s divine conscience, the church and the social institutions have the obligations to uphold God\'s Divine Moral Laws which are meant to bring welfare to individuals and to societies. The Golden Rule was meant for the survival and stability of human society. The genetic information of individuals should be guarded as one\'s private property and is to be protected against unjustified intrusion.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

6 creature representing creation to god
6. Creature Representing Creation to God
  • The Fall brought about the three fold alienation of man: (1) with the Creator, (2) with fellow creatures, (3) with the creation, resulting in the loss of spiritual, social and physicalhealth respectively. Man representing the creation in reconciliation in each of these 3 levels through Jesus Christ brings man into harmony with God and the creation in the healing process. Without the covenantal relationship of reconciliation in each of these 3 levels, holistic health cannot be achieved

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

7 conformed to the image of the incarnate word
7. Conformed to the Image of the Incarnate Word.
  • Based on the historical fact of Christ\'s resurrection, the redemption of our bodies at Christ\'s second coming is the consummation of all creation, which eagerly awaits its liberation from its bondage to decay and deliverance into the glorious freedom of the children of God. By conforming to the image of Christ, man is justified and will be glorified when his lowly body is transformed to be like His glorious body. It is therefore wrong to look for the domination of creation including the elimination of human suffering outside the lordship of Christ in other earthly powers such as those of the state and science and technology

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide63

A Perfect Human Being:

  • 1. Creature of God: Confined by Finitude
  • 2. Created to Enjoy and Glorify God
  • 3. Made Alive by the Direct Involvement of God
  • 4. Created to be God\'s Steward
  • 5. Created in His Image: Divine Moral Law
  • 6. Creature Representing Creation to God
  • 7. Conformed to the Image of the Incarnate Word.

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

slide65

Prohibition on Genetic Discrimination in Employment and Insurance.GeneticInformation Nondiscrimination Act of 2008 Public Law No: 110-233passed May 21, 2008http://www.govtrack.us/congress/bill.xpd?bill=h110-493

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

2 establishing uniform rule to protect genetic privacy i e hipaa

2. Establishing Uniform Rule to Protect Genetic Privacy (i.e. HIPAA)

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

hipaa health insurance portability and accountability act of 1996
HIPAA: Health Insurance Portability and Accountability Act of 1996
  • PROTECTING THE PRIVACY OF PATIENTS\' HEALTH INFORMATION :
  • The rule does not restrict the ability of doctors, nurses and other providers to share information needed to treat their patients. In other situations, though, personal health information generally may not be used for purposes not related to health care, and covered entities may use or share only the minimum amount of protected information needed for a particular purpose. In addition, patients would have to sign a specific authorization before a covered entity could release their medical information to a life insurer, a bank, a marketing firm or another outside business for purposes not related to their health care.
  • http://www.hhs.gov/news/facts/privacy.html

Dr. Pattle Pun, Biology, Wheaton College, IL 60187

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