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International Birth Defects Information Systems
Ethics Bioethics Medical Ethics

International Birth Defects Information Systems

Ethics Bioethics Medical Ethics

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[*] The Division of Extramural Research
Division of Extramural Research (DER) supports and administers the role of the National Institutes of Health (NIH) in Genomic Research. In consultation with the broader genomic community, the DER supports grants for research and for training and career development at sites nationwide ... plans and supports activities that advance genomics; and directs the Ethical, Legal and Social Implications (ELSI) Research Program, which explores the ethical and policy issues raised by genetic research.

Human Genome Project Information
Note: For ELSI research information, see our ELSI Research page ... The U.S. Department of Energy (DOE) and the National Institutes of Health (NIH) ... Societal Concerns Arising from the New Genetics ... Fairness in the use of genetic information ... Privacy and confidentiality ... Psychological impact and stigmatization ... Reproductive issues ... Clinical issues ...

The Human Genome Project
National Reference Center for Bioethics Literature, The Joseph and Rose Kennedy Institute of Ethics, Box 571212, Georgetown University, Washington, DC 20057-1212
Table of Contents, Background Essay, General Surveys, The Debate, U.S. Project History, International Involvement, The Human Genome Map, Ethical, Legal, and Social Issues, Position Statements, Additional Information Resources ... The Human Genome Project is not without controversy ... The first serious discussions about sequencing the entire human genome occurred at a workshop at the University of California at Santa Cruz in 1985 ... To avoid potential congressional ''meddling'', NIH and DOE drafted a memorandum of understanding for interagency coordination in October 1988 ... In 1988, the EC introduced a proposal entitled the ''Predictive Medicine Programme.'' A few EC countries, notably Germany and Denmark, claimed the proposal lacked ethical sensitivity ... Human Genome Organization (HUGO), which has been called the''U.N. for the human genome,'' was born in the spring of 1988 ... Ethical, Legal and Social Aspects

About ELSI
National Human Gerome Research Institute
The planners of the U.S. Human Genome Project (HGP) recognized that the information gained from mapping and sequencing the human genome would have profound implications for individuals, families, and society. While this information would have the potential to dramatically improve human health, they realized that it would also raise a number of complex ethical, legal and social issues. How should this new genetic information be interpreted and used? Who should have access to it? How can people be protected from the harm that might result from its improper disclosure or use? ... The ELSI Program is organized around four program areas ... Privacy and Fairness in the Use and Interpretation of Genetic Information ... Clinical Integration of New Genetic Technologies ... Issues Surrounding Genetics Research ... Public and Professional Education ... The ELSI Research Planning and Evaluation Group (ERPEG) Final Report ... In July 1997, NHGRI's National Advisory Council for Human Genome Research (NACHGR) and DOE's Biological and Environmental Research Advisory Committee (BERAC) established the ELSI Research Planning and Evaluation Group (ERPEG). ERPEG's mission was to review and analyze the portfolio of ELSI research grants at both NHGRI and DOE, to participate in the development of the ELSI component of the new five year plan for the HGP, and to prepare a report for submission to NACHGR and BERAC summarizing its findings and making recommendations ...

A Guide to Bioethics Resources on the Web
Guide to Healthcare Schools, 2010
... Swift developments in cloning, embryonic research, abortion, body modification, euthanasia, end-of-life, neurology, and a plethora of other hot topics have caused health care professionals, policymakers, and the public to become increasingly concerned with our ethical and moral responsibilities when facing these complicated issues

 National Bioethics Advisory Commission
General Information

National Information Resource on Ethics & Human Genetics
National Reference Center for Bioethics Literature Kennedy Institute of Ethics, Georgetown University
Established on September 1, 1994, with the support of the predecessor of the National Human Genome Research Institute, the National Information Resource is affiliated with the National Reference Center for Bioethics Literature (NRC), the world's largest collection of material relevant to medical ethics and biomedical research. Approximately 15 per cent of the NRC's collection of more than 22,000 volumes and 130,000 cataloged articles deals with issues in molecular biology and human genetics ...

National Reference Center for Bioethics Literature
Georgetown University

American Society for Bioethics and Humanities
The American Society for Bioethics and Humanities (ASBH) is a professional society of more than 1,500 individuals, organizations, and institutions interested in bioethics and humanities ...

Applying the Ethic of Reverence for Life to the Issue of Abortion in America
Joie Karnes
Albert Schweitzer argues that humanity is in a period of spiritual decline. Having discovered the principle of Reverence for Life, which contains the ethical affirmation of life, Schweitzer wanted to effect change in the world by helping people "to think more deeply and more independently" (223) ... Schweitzer has Reverence for Life, but he also argues that independent thought is necessary for an individual to be capable of living this ethic ... Schweitzer points out that individuals are also intimidated by the "prodigious development in knowledge" (225). New discoveries are beyond their comprehension, so people are forced to accept what they do not understand ... Schweitzer warns that blindly accepting something as true without personal reflection retards the individual's advance of reason. "Our very attempt to manipulate truth itself brings us to the brink of disaster" (227) ... Schweitzer, Reverence for Life answers the question of how human beings and the universe are related to one another. He asserts that all we know is this: everything that exists in the universe is the will to live manifesting itself. Human beings have both an active and a passive role ...

Fond du Lac - Roger Rigterink, Professor, Department of Philosophy University of Wisconsin

William F. May, Cary M, Southern Methodist University, Dallas, Texas.
James Gustafson complains that theologians writing in the field of medical ethics tend to do so as closet Christians and Jews ... I responded in a pejorative way, 'An ethicist is a former theologian who does not have the professional credentials of a moral philosopher ...

Biomedical Ethics: Readings on the Internet
The Physician-Patient Relationship ... Patient autonomy ... The hallmark of contemporary American medical ethics ... Patient Physician conflicts ... Parental preferences vs. a child's best interest ... Euthanasia ... Decisions not to treat ... In Vitro Fertilization (IVF) In 1978, Drs. Edwards and Steptoe announced the birth of Louise Brown (not the child's real name, but one used to protect her identity and the identity of her parents), the first child to be conceived outside of the womb. (Taken literally, IVF means "fertilized in glassware.") ... Cloning ... Genetic encores: the ethics of human cloning ... Genetics and Food Production ... protection of human subjects of research ... exposing humans to radiation ... The Tuskegee syphilis experiment ... What is thalidomide? ...

International Communication Forum in Human Molecular Genetics
requests from professionals regarding: collaborative

Eco-Ethics International Union (EEIU)
Akimov, Kyiv, Ukraine: Boreyko, Kyiv, Ukraine: Davydchuk, Kyiv: Grodzinsky, Dmitry M, Kyiv, Ukraine: Marchukova, Ukraine: Sozinov, Oleksiy O, Ukraine: Tsytsugina, Ukraine: Yurzditskaya, Ukraine: Ziaka, Ukraine: Zaitsev, Ukraine ...

Fetus as a Patient: Discourse to International Congress
Pope John Paul II, April 3, 2000
I am happy to have this opportunity to welcome you to the Vatican on the occasion of your International Congress ... In recent decades, when the sense of the humanity of the fetus has been undermined or distorted by reductive understandings of the human person and by laws which introduce scientifically unfounded qualitative stages in the development of conceived life, the Church has repeatedly affirmed and defended the human dignity of the fetus. By this we mean that "the human being is to be respected and treated as a person from the moment of conception; and therefore from that same moment his rights as a person must be recognized, among which in the first place is the inviolable right of every innocent human being to life" ... A case of special moral gravity, often deriving from these illicit procedures, is so-called "embryonic reduction", or the elimination of some fetuses when multiple conceptions take place at one time. Such a procedure is gravely illicit when multiple conceptions occur in the normal course of marital relations, but it is doubly reprehensible when they are the result of artificial procreation ...

Scientific Committee
International Society of Bioethics
Resumes of the Members of the SIBI Scientific Committee ...

The American Journal of Bioethics Online

Journal of the International Association of Bioethics
Published in association with the International Association of Bioethics ... the subject of bioethics has an ever increasing practical relevance for all those working in philosophy, medicine, law, sociology, public policy, education and related fields ... Bioethics provides a forum ...

Genethics January 2001
American Medical Association
Should Genetic Information Be Treated Separately? ... Incomplete patient charts? "Shadow" files? Though such practices sound as fishy as 2 sets of account books, federal and state legislative initiatives regarding genetic information could lead physicians to start keeping these sorts of double or shadow files. The belief that genetic information should be filed separately from other medical information and handled with special attention to confidentiality was termed "genetic exceptionalism" by the Task Force on Genetic Information and Insurance, an NIH-DOE joint working group of the Human Genome Project ... Genetic Information is Prophetic, Some Say ... "Genetic Exceptionalism" is Ethically Unjust ...

Sex, Marriage, and Family
A Social Statement of the Lutheran Church in America

Abortion and Animals: Keeping Women in the Equation
Carol J. Adams
What does the issue of abortion have to do with the issue of animal defense?

Animal Advocacy and Abortion
By Larry Rosenfeld
there is no consensus among animal advocates about abortion

Abortion Facts and the Bible
By John Cripps
Abortion and the voice of History ... there are no references to abortion before the year 1400 B.C. As early as 2000 B.C., in Egypt and Mesopotamia, there are records of drugs that caused miscarriages, but the Egyptians had a high view of life, even mummifying fetuses. The Assyrian Codex in 1100 B.C. stated that abortion was punishable by impalement. Persian law in 600 B.C. called abortion willful murder ... During the New Testament times abortion was practiced by the Greek and Roman cultures ... The United States is a country where 5,500 abortion clinics abort 30% of all pregnancies ...

Voice of the Voiceless
“Abortion is the state of prison, prison is traditional. Those who abort animals by sucking the animal from the womb of the land to the prison called the zoo must surely abort baby from mother by sucking the baby from the womb of the mother to the prison of a plastic bag, a jar of formaldehyde, an experimental laboratory ... Unintended Consequences ... The Flaws of the “pro-Choice” ethic ... “Do not slay your children because of poverty - We will provide for you and them...” ... The Holy Qur’an ... Sura 6:151 ...

Genetic testing policies must stress informed consent

Who Counts?
For over eight years the three monkeys immobilized in harnesses have sat staring helplessly from their cages. Their paralyzed limbs dangling at their sides have been useless appendages since researchers eight years ago cut their nerves in experiments. According to the director of the National Institutes of Health, they now "give evidence of frequent, unrelievable pain." Experimenters plan next to surgically remove the tops of the monkey's skulls, insert electrodes to take brain measurements, and finally kill them, all as part of a research project on spinal cord injuries financed by the National Institutes of Health ... one of the most fundamental dividing lines in morality is the one we draw between those who count in our moral considerations and those that don't, or, as ethicists sometimes put it, between those who do and those who don't have moral standing. What is moral standing?

Society's interest in protection for the fetus (PDF Document)
Kenneth M. Flegel, MD, MSc, CMAJ 1998;158:895-6, April 7, 1998 * le 7 avril 1998, Canadian Medical Association Journal.
The primacy of the person is a central tenet of Western civilization. In medicine this person-centred ethic is enshrined in the principle of individual autonomy, by which we understand that each person is free to make decisions and choices based on the values to which he or she is committed. At the societal level this primacy is acknowledged in the recognition of human rights. Human rights constitute the touchstone of a mature and democratic society ...

Mapping the Human Genome and the Meaning of Monster Mythology
Emory law Journal----Summer 1990----Vol. 39, No. 3

Ethical Principles of Psychologists and Code of Conduct
American Psychological Association

Medical Ethics
Canadian Medical Association ... Brain Death ... Jewish Medical Ethics ... Pope John ... Catholic Institute ...

Webpages ... Ethics of Scientific Knowledge and Technology

Glossary Entries ... Alpha ... Aramaic ... Alexander Bain ... Etiology ...

The Assent of A Nation ... Genethics and Iceland
Johns Hopkins University School of Medicine
grant a monopoly to a biotechnology company for its establishment and use in medical and genetic research (1)
... Hoffman-LaRoche (3) is providing major financial backing ... centralized database of non-personally identifiable health data with the aim of increasing knowledge in order to improve health and health services ... personal identification shall be coded one-way, i.e. by coding that cannot be traced using a decoding key" and 2) "a patient may request that information on him/her not be entered into the health sector database ... It is possible to create a database of personally identified or identifiable data ... The advantage ... if necessary for health or other reasons ... Clearly it would cost great effort, time and money to gain consent from every individual in a data collection envisaged here ... The opposition ... three critical issues ... no provisions for establishing informed consent ... one-way encryption will not, in fact, protect the rights of the individual ... granting exclusive rights ... is seen as wrong ... The Icelandic Medical Association opposed the legislation from its initial draft and continues to do so ...

Responsible Conduct of Research (RCR) Education
Office of Research Integrity
Online Resources for RCR Instruction ... Research Integrity/Ethics Training ...
The Ethics of Human Cloning
By Leon R. Kass.

Dangers of Genetic Manipulation
By Pope John Paul II
Address to members of the World Medical Association (October 29, 1983) ... You are cordially welcome in this house, the more so because a particular convergence exists between your concerns and those of the Church. Medicine is an eminent, essential form of service to mankind ... The theme of your meeting in Venice, "The physician and the rights of man," was an additional reason to arouse the interest of the Holy See ... The totality of these rights corresponds to the substance of the dignity of the human being ... The rights to which one refers are not, in the first place, those which are recognized by the changing legislations of civil society, but they are rooted in fundamental principles, in the moral law which is based on being itself and which is immutable. The domain of deontology may appear, especially today, as the most vulnerable in the field of medicine, but it is essential, and medical morality should always be considered by practitioners as that norm of their professional practice ... the respect for life. There is no one, believer or unbeliever, who can refuse to respect human life, to make it his duty to defend it, to save it, most especially when as yet it has no voice to proclaim its rights ... the concessions that the civil law allows one to make in the case, for example, of abortion or of euthanasia ... God alone is the master of human life and of its integrity ... in the matter of "genetic manipulation" which poses a serious question to every individual's moral conscience. How, in fact, can such manipulation be reconciled with a concept that credits man with an innate dignity and an untouchable autonomy? ... The biological nature of each person is untouchable in the sense that it is constitutive of the personal identity of the individual throughout the whole course of his history ... To tell the truth, the expression "genetic manipulation" remains ambiguous and should constitute an object of true moral discernment ...

MetaGenethics Sites ... Syllabi and Education ... The Human Genome Project/ELSI ... Gene Therapy and Engineering ... Testing, Confidentiality and Discrimination ... Patents ... Eugenics ...

The Belmont Report
Office of the Secretary, Ethical Principles and Guidelines for the Protection of Human Subjects of Research, The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, April 18, 1979
On July 12, 1974, the National Research Act (Pub. L. 93-348) was signed into law, there-by creating the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research ... the Commission was directed to consider: (i) the boundaries between biomedical and behavioral research and the accepted and routine practice of medicine, (ii) the role of assessment of risk-benefit criteria in the determination of the appropriateness of research involving human subjects, (iii) appropriate guidelines for the selection of human subjects for participation in such research and (iv) the nature and definition of informed consent in various research settings ...


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