Neil F. Sharpe

Genetic testing is revolutionizing medicine. 

Note: This text has received sales support through to 2025, 19 years after it was first published. Many thanks for the interest and response.

"Sharpe and Carter have produced a different kind of book that addresses many of the topics we discuss at conferences and on listservs but rarely get addressed in a cohesive and organized manner in print. It's about time." (Journal of Genetic Counseling, August 2006)

"...a unique and valuable resource that should be included in the library of physicians...a worthwhile text for clinicians pursuing genetics." (Annals of Internal Medicine, July 2006)

"Very few books can be compared to this one…a very useful tool…" (Doody's Health Services)

"...an excellent practical resource on genetic testing in health care...contains an exponential amount of information, presented in an easy-to-understand format…" (CHOICE, June 2006) 

***

Over 1000 genetic tests are commercially available and more are anticipated. Genetics, genetic testing, and genetic counseling are critical components of medical care.

Health care professionals diagnosing and treating patients today must consider genetic factors, the risks and limitations of genetic testing, and the relevant law.

Genetic Testing: Care, Consent and Liability, prepared by the Contributing Editors, Neil Sharpe and Ronald Carter, provides the only concise, clearly written, practical information about the medical, legal, and ethical issues in medical genetics, genetic testing and genetic counseling that confront health care professionals, particularly with regard to the law of medical malpractice.

This essential book features an international roster of esteemed contributors including:

Nancy P. Callanan, Bonnie S. LeRoy, Carole H. Browner, H. Mabel Preloran, Riyana Babul-Hirji, Cheryl Shuman, M.J. Esplen, Maren T. Scheuner, Dena S. Davis, JonBeckwith, Lisa Geller, Mark A. Hall, Andrew R. MacRae, David Chitayat, Roxanne Mykitiuk, Stephanie Turnham, Mireille Lacroix, Jinger G, Hoop, Edwin H, Cook, Jr., S. H. Dinwiddie, Elliot S. Gershon, C. Anthony Rupar, Lynn Holt, Bruce R. Korf, Anne Summers, S. Annie Adams, Daniel L. Van Dyke, Rhett P. Ketterling, Erik C. Thorland, Timothy Caulfield, Lorraine Sheremeta, Richard Gold, Jon F. Merz, David Castle, Peter J. Bridge, JS Parboosingh, Patricia T. Kelly, Julianne M. O'Daniel, Allyn McConkie-Rosell, Beatrice Godard, Bartha Maria Knoppers, David Weisbrot.

The coverage includes:

Genetic Testing Care, Consent, and Liability is a must-have resource for clinical geneticists, genetic counselors, specialists, family physicians, nurses, health care administrators, public health professionals, educators and medical students.

NEIL F. SHARPE's particular interests deal with the emotional, psychological, social, ethical, and legal aspects of medical genetics, genetic testing and genetic counseling with a focus on cancer genetics.

Neil’s publications, in leading human/medical genetics journals and law journals, have focused on the development of appropriate standards and duties of care for the delivery of genetic testing and genetic counseling services

Neil serves as a consultant in health policy, patient/public education and support programs, regulatory/legal affairs.

RONALD F. CARTER, is Director, Genetic Services, Hamilton Health Sciences and Professor, Department of Pathology and Molecular Medicine, McMaster University. He is a former president of the Canadian College of Medical Genetics, and a founding fellow of the American College of Medical Genetics. Dr. Carter was appointed to direct a regional cytogenetics laboratory in 1991, and now directs a medical genetic service with a catchment of over two million people.

Web Resources

Cancer Genetics

National Cancer Institute: Elements of Cancer Genetics Risk Assessment and Counseling

http://www.cancer.gov/cancertopics/pdq/genetics/risk-assessment-and-counseling/HealthProfessional/page4

U.S. Cancer Genetics Services Directory

http://www.cancer.gov/search/genetics_services/

Continuing Medical Education: Genetics

National Coalition for Health Professional Education in Genetics

http://www.nchpeg.org

National Center for Biotechnology Information: Genes and disease: a collection of articles that discuss genes and the diseases that they cause

http://www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=gnd

National Institutes of Health:  National Library of Medicine

http://www.nlm.nih.gov/pubs/cbm/health_risk_communication.html

Dictionary of Genetic Terms

Human Genome Project

http://www.ornl.gov/sci/techresources/Human_Genome/publicat/primer2001/glossary.shtml

Ethics Resources

Genethics

http://genethics.ca/

Genethics: Murdoch Childrens Research Institute

http://www.genecrc.org/site/ge/index_ge.htm

U.S. Department of Energy: Legal, Ethical, and Social Issues

http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml

Family History Resources- Professional

American Medical Association

http://www.ama-assn.org/ama/pub/category/2380.html

Centers for Disease Control

http://www.cdc.gov/genomics/public/famhistMain.htm

Centres for Disease Control: Public Health Perspective: Family History Tools

http://www.cdc.gov/genomics/info/perspectives/famhistr.htm

National Coalition for Health Professional Education in Genetics (2004) The Genetic Family History in Practice. (PDF only)

http://www.nchpeg.org/newsletter/inpracticesum04.pdf  Accessed…

National Cancer Institute: Elements of Cancer Risk Assessment and Counseling: Taking a Family History:

http://www.cancer.gov/templates/doc.aspx?viewid=c0fc1ac3-607b-44a5-9d24-39b0a2a4703c&version=HealthProfessional&sectionID=1&#Section_18

Family History Resources- Public

American Medical Association

http://www.ama-assn.org/ama/pub/category/2380.html

Centers for Disease Control

http://www.cdc.gov/genomics/public/famhistMain.htm

March of Dimes

http://www.marchofdimes.com/pnhec/4439_1109.asp

U.S. Department of Health and Human Services: Family History Intiative

http://www.genome.gov/12513847:

For a practical family history tool, please see:

www.hhs.gov/familyhistory

Genetic Counseling Resources

American Board of Genetic Counseling

http://genetics.faseb.org/genetics/abgc_diplomates.html

National Society of Genetic Counselors

http://www.nsgc.org/resourcelink.asp

How To Find A Genetic Counselor (U.S.)

http://www.genetichealth.com/Resources_How_to_Find_a_Genetic_Counselor.shtml

Canadian Association of Genetic Counsellors

http://www.cagc-accg.ca/

Genetic Research and Resources

Centers for Disease Control: Human Genome Epidemiology Network

http://www.cdc.gov/genomics/hugenet/default.htm

The National Center for Genome Resources (NCGR)

http://www.ncgr.org/

National Human Genome Research Institute

http://www.genome.gov/

OMIM, Online Mendelian Inheritance in Man. A catalog of human genes and genetic disorders

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM

Genetic Testing Resources

GeneTests: a publicly funded medical genetics information resource developed for physicians, other healthcare providers, and researchers, available at no cost to all interested persons.

http://www.genetests.org/

Association of Public Health Laboratories: Newborn Screening and Genetics

http://www.aphl.org/Newborn_Screening_Genetics/index.cfm

Centers for Disease Control: Genetic Testing

http://www.cdc.gov/genomics/gTesting.htm

Centers for Disease Control: Regional and State Genetics Directory

http://www.cdc.gov/genomics/links/regional.htm

Directory of Medical Cytogenetic Laboratories in Canada

http://www.hrsrh.on.ca/genetics/canlabs.htm

Genetics and Public Policy Center

http://www.dnapolicy.org/genetics/testing.jhtml;$sessionid$ETC3MSIAAAYYUCQBAT3RVQQ

Glossary of Terms

University of Kansas Medical Center

http://www.kumc.edu/gec/glossnew.html

National Human Genome Research Institute:

http://www.ornl.gov/sci/techresources/Human_Genome/glossary/

National Human Genome Research Institute: Glossary in Spanish

http://www.genome.gov/sglossary.cfm

Insurance

Georgetown University Health Policy Institute

http://www.healthinsuranceinfo.net/

Laboratories

Association of Public Health Laboratories: Newborn Screening and Genetics

http://www.aphl.org/Newborn_Screening_Genetics/index.cfm

GeneTests: A publicly funded medical genetics information resource developed for physicians, other healthcare providers, and researchers, available at no cost to all interested persons.

http://www.genetests.org/

Canadian College of Medical Geneticists: Cytogenetics

http://www.hrsrh.on.ca/genetics/CanCyt/

Directory of Medical Cytogenetic Laboratories in Canada

http://www.hrsrh.on.ca/genetics/canlabs.htm

Language

Genetic Information Websites in Spanish for Public Education

http://www.ornl.gov/sci/techresources/Human_Genome/education/spanish.shtml

Legal

Council for Responsible Genetics (CRG): Genetics and the Law

http://www.genelaw.info/

Genetics and Public Policy Center

http://www.dnapolicy.org/policy/legalIssues.jhtml

Genetic Laws and Legislative Activity (U.S.)

http://www.ncsl.org/programs/health/genetics/charts.htm

National Cancer Institute: Elements of Cancer Risk Assessment and Counseling: Informed Consent

http://www.cancer.gov/templates/doc.aspx?viewid=c0fc1ac3-607b-44a5-9d24-39b0a2a4703c&version=HealthProfessional&sectionID=1&#Section_89

National Conference of State Legislatures (U.S.): Newborn Genetic and Metabolic Screening

http://www.ncsl.org/programs/health/genetics/nbs.htm

Prenatal/Neonatal- Professional Resources

American Academy of Pediatrics- Section on Birth Defects: Policy Statement and Information on Specific Disorders

http://www.aap.org/healthtopics/birthdefects.cfm

American College of Medical Genetics Foundation: Evaluation of the Newborn with Single or Multiple Congenital Anomalies: A Clinical Guideline

http://www.health.state.ny.us/nysdoh/dpprd/index.htm

American College of Obstetricians and Gynecologists: Committee Opinion on
first-trimester prenatal screening methods for chromosome abnormalities,
including nuchal fold translucency screening. To read more about first
trimester screening and the policy issues surrounding it, visit the Center's
website:

http://www.dnapolicy.org/FirstTrimesterScreening

Association of Public Health Laboratories: Newborn Screening and Genetics

http://www.aphl.org/Newborn_Screening_Genetics/index.cfm

Catalogue of Rare Genetic Diseases in Children

http://www.med.nyu.edu/rgdc/disease.htm

Frequency of Inherited Disorders Database

http://archive.uwcm.ac.uk/uwcm/mg/fidd/

Genetics and Public Policy Center: Prenatal Genetic Testing

http://www.dnapolicy.org/genetics/prenatal.jhtml

March of Dimes Fact Sheets: These cover a wide range of prenatal and genetic topics in English and Spanish

http://www.marchofdimes.com/professionals/681_1116.asp

March of Dimes Fact Sheets: Newborn Screening

http://www.marchofdimes.com/professionals/580.asp

National Newborn Screening and Genetics Resource Center

http://genes-r-us.uthscsa.edu/

National Conference of State Legislatures (U.S.): Newborn Genetic and Metabolic Screening

http://www.ncsl.org/programs/health/genetics/nbs.htm

Rare genetic diseases in children

http://www.med.nyu.edu/rgdc/disease.htm

Prenatal/Neonatal- Public Resources

Birth Defect Research for Children provides parents and expectant parents free fact sheets about the most common categories of birth defects, the National Birth Defect Registry, and research resources. 

http://www.birthdefects.org/

Canadian Organization for Rare Disorders

http://www.cord.ca/

Centers for Disease Control: Fact Sheets (e.g. carrier testing, prenatal diagnosis, etc. including information about specific genetic diseases and disorders)

http://www.cdc.gov/genomics/public/facts.htm

Cystic Fibrosis Foundation (U.S.): Directory of care centers and chapters.

http://www.cff.org/chapters_and_care_centers/

Genetic and Rare Diseases Information Center

http://www.genome.gov/10000409

March of Dimes Pregnancy & Newborn Health Education Center
http://www.marchofdimes.com/pnhec/pnhec.asp

Medline Plus: Genetic Testing

http://www.nlm.nih.gov/medlineplus/genetictesting.html

National Newborn Screening and Genetics Resource Center

http://genes-r-us.uthscsa.edu/

National Organization for Rare Disorders

http://www.rarediseases.org/

National Conference of State Legislatures (U.S.): Newborn Genetic and Metabolic Screening

http://www.ncsl.org/programs/health/genetics/nbs.htm

Rare genetic diseases in children

http://www.med.nyu.edu/rgdc/disease.htm

Professional Organizations

American Board of Genetic Counselors

http://genetics.faseb.org/genetics/abgc_diplomates.html

American Board of Genetic Counseling

http://www.abgc.net/

American Board of Medical Genetics

http://www.abmg.org/

American College of Medical Genetics

http://www.acmg.net/

American Society of Human Genetics

http://genetics.faseb.org/genetics/ashg/ashgmenu.htm

Association of Genetic Technologists

http://www.agt-info.org/

Australasia: The Human Genetics Societies of Australasia:

http://www.hgsa.com.au/

Canadian College of Medical Genetics

http://ccmg.medical.org/

Council of Medical Genetics Organizations

http://genetics.faseb.org/genetics/ashg/comgo.htm

European Society of Human Genetics

http://www.eshg.org/

Genetics Society of America

http://www.genetics-gsa.org/

International Federation of Human Genetics Societies

http://www.ifhgs.org/

Latin American Network of Human Genetics Societies

http://www.relagh.ufrgs.br/

International Society for Nurses in Genetics

http://www.isong.org/

National Society of Genetic Counselors

http://www.nsgc.org/

National Coalition for Health Professional Education in Genetics

http://www.nchpeg.org/]

National Society of Genetic Counselors

http://www.nsgc.org/resourcelink.asp

International Federation of Human Genetics Societies

http://genetics.faseb.org/genetics/ifhgs/

The Coalition of State Genetics Coordinators (CSGC)

http://www.stategeneticscoordinators.org/

Psychological

American Psychological Association

http://www.apa.org/science/genetics/homepage.html

National Cancer Institute: Elements of Cancer Risk Assessment and Counseling: Psychological Impact of Genetic Information/Test Results on the Family

http://www.cancer.gov/templates/doc.aspx?viewid=c0fc1ac3-607b-44a5-9d24-39b0a2a4703c&version=HealthProfessional&sectionID=1&#Section_108

Patient and Public Education

Medline Plus: Genetic Testing

http://www.nlm.nih.gov/medlineplus/genetictesting.html

Genetic Disorders: Human Genome Project Information

http://www.ornl.gov/sci/techresources/Human_Genome/medicine/assist.shtml

Genetic Information Websites in Spanish for Public Education

http://www.ornl.gov/sci/techresources/Human_Genome/education/spanish.shtml

Human Genome Project: Exploring Our Molecular Selves: Online Multimedia Education Kit

http://www.genome.gov/Pages/EducationKit/

Medicine and the New Genetics: Human Genome Project Information

http://www.ornl.gov/sci/techresources/Human_Genome/medicine/medicine.shtml

March of Dimes Pregnancy & Newborn Health Education Center
http://www.marchofdimes.com/pnhec/pnhec.asp

Public Genetics Education: Gene Almanac (produced by Dolan Learning Center, Cold Springs Harbor, New York)

http://www.dnalc.org/

U.S. Department of Energy Office of Science

http://www.doegenomes.org/

Public Health

Genomics for Public Health Practitioners  is a 45 minute introductory presentation on genomics and public health. Resource is intended for public health practitioners who have minimal experience in the area of genomics as it pertains to public health.

http://www.cdc.gov/genomics/training/GPHP/default.htm

Centres for Disease Control: Public Health Perspective: Family History Tools

http://www.cdc.gov/genomics/info/perspectives/famhistr.htm

Secretary’s Advisory Committee on Genetic Testing (U.S.)

http://www4.od.nih.gov/oba/sacghs/sacghslinks.html

Policy Issues

American College of Medical Genetics Policy Statements

http://genetics.faseb.org/genetics/acmg/pol-menu.htm

American Society of Human Genetics Policy Papers and Reports

http://genetics.faseb.org/genetics/ashg/policy/pol-00.htm

Public Issues

The Foundation for Genetic Education and Counseling (FGEC) is a non-profit organization dedicated to raising the understanding of human genetics and genetic medicine among the general public and their health professionals.

http://www.fgec.org/

Foundation for Genetic Medicine

To help create and strengthen a supportive environment for the ethical development of genetic medicine to improve human health.

http://www.geneticmedicine.org/

Genetics and Public Policy Center

http://www.dnapolicy.org/

Risk Communication

National Institutes of Health:  National Library of Medicine

http://www.nlm.nih.gov/pubs/cbm/health_risk_communication.html

Support Organizations

American Directory of Genetic Support Groups

http://www.kumc.edu/gec/support/

Birth Defect Research for Children:  Provides parents and expectant parents free fact sheets about the most common categories of birth defects, the National Birth Defect Registry, and research resources. 

http://www.birthdefects.org/

Canadian Directory of Genetic Support Groups

http://www.lhsc.on.ca/programs/medgenet/

Canadian Organization for Rare Disorders

http://www.cord.ca/

Cystic Fibrosis Foundation (U.S.): Directory of care centers and chapters.

http://www.cff.org/chapters_and_care_centers/

Genetic Alliance (U.S.)

http://www.geneticalliance.org/

March of Dimes
http://www.marchofdimes.com/

National Newborn Screening and Genetics Resource Center

http://genes-r-us.uthscsa.edu/

National Organization for Rare Disorders

http://www.rarediseases.org/