Managing familial risk in genetic testing.

  title={Managing familial risk in genetic testing.},
  author={Sara Taub and Karine Morin and Monique A. Spillman and Robert M. Sade and Frank A. Riddick},
  journal={Genetic testing},
  volume={8 3},
Increasing numbers of people are seeking genetic testing and uncovering information that directly concerns their biological relatives as well as themselves. This familial quality of genetic information raises ethical quandaries for physicians, particularly related to their duty of confidentiality. In this article, the American Medical Association's Council on Ethical and Judicial Affairs examines the informed consent process in the specific context of genetic testing, giving particular… 

Family Communication of Genomic Information

There is a paradoxical situation in which family information is often pivotal in risk assessment procedures, but an individual consultand, whose genetic status may have been clarified through the sharing of “family information,” may also have the right to prevent disclosure of what is now “personal information” to other family members.

Intrafamilial disclosure of risk for hereditary breast and ovarian cancer: points to consider

A points to consider has been developed to address a number of issues that might impact the ability and willingness of patients to inform family members of genetic risk, considering the complexity of human relationships and the probabilistic nature of genetic information.

Polygenic risk scores in the clinic: new perspectives needed on familiar ethical issues

It is argued that despite the parallels to the monogenic setting, new work is urgently needed to gather data, consider normative implications, and develop best practices around this emerging branch of genomics.

Family History in Primary Care Pediatrics

Interval family histories targeted to symptoms and family histories tailored to a child’s life stage (ie, age-based health) may be important and underappreciated methods of collecting family history that yield clinically actionable data and supplement existing family history information.

Incidental Findings in Pediatric Research

It is important to communicate this plan during the informed consent process separately to adolescents to avoid enrolling adolescents when sensitive incidental findings such as pregnancy and drug use may be detected.

A legacy for the children--attitudes of older adults in the United Kingdom to genetic testing.

The results of this study confirm the need for nurses to be proactive in developing the genetic competencies required to detect potential familial disease, make appropriate referrals to genetic services and ensure informed consent is obtained for genetic testing.

Judging Direct-to-Consumer Genetics: Negotiating Expertise and Agency in Public Biotechnological Practice

This article analyzes how providers of direct-to-consumer genetic tests communicate about abstract, technical genetic science with nonexpert audiences. It argues that direct-to-consumer genetics

Attitudes of Health Care Professionals Toward Pharmacogenetic Testing

The findings demonstrate the existence and seriousness of several challenges pertaining to pharmacogenetic applications in the clinical setting and further training and education are needed for health care professionals, since they are the ones who will most probably request these tests in the near future.

From Bedside to Bench to Bedside to Clinical Practice: An Odyssey with Irinotecan

  • M. Ratain
  • Medicine
    Clinical Cancer Research
  • 2006
This paper presents a large number of novel mechanisms leading to cell reprograming and describes the “building blocks” of these mechanisms that occur in the final stages of drug-drug interaction.



Disclosure of Huntington's disease to family members: the dilemma of known but unknowing parties.

The potential legal duty of a physician to disclose or withhold genetic information from the family members of patients and the ethical standards to be invoked when considering violating the privacy of a patient or a family member are analyzed.

Genetic privacy and the law: an end to genetics exceptionalism.

The authors argue that genetic exceptionalism is flawed for two reasons: strict protections of autonomy, privacy, and equal treatment of persons with genetic conditions threaten the accomplishment of public goods; and there is no clear demarcation separating genetic data from other health information; other health data deserve protections in a national health information infrastructure.

Genetic testing for susceptibility to adult-onset cancer. The process and content of informed consent.

The task force recommends that informed consent for cancer susceptibility testing be an ongoing process of education and counseling in which providers elicit participant, family, and community values and disclose their own.

Code of medical ethics : current opinions with annotations

This edition features more than 185 ethical opinions of the AMA's Council on Ethical and Judicial Affairs, including 12 new opinions in this edition on privacy, genomic research, electronic mail, errors, health-related Web sites, and cloning.

Gene mapping: using law and ethics as guides

This volume takes the reader through all the main ethical aspects of the project to map the human genome: the question of the moral distinction between somatic and germline gene therapy; privacy and control of genetic information, including the possible consequences of genetic testing for insurance and employment, and the danger of the reinforcement of racial prejudice.

Drafting the Genetic Privacy Act: Science, Policy, and Practical Considerations

A central question presented by genetic screening and testing is whether the genetic information so obtained is different in kind from other medical information (such as family history and cholesterol levels), and, if so, whether this means that it should receive special legal protection.

Predisposition genetic testing for late-onset disorders in adults. A position paper of the National Society of Genetic Counselors.

Identification of cancer susceptibility genes and of genes leading to several neurogenetic disorders, including Alzheimer disease and some forms of ataxia, represents the start of a cascade of genes to be identified that confer susceptibility to adult-onset diseases.

Medical ethics: Code of Medical Ethics: Current Opinions With Annotations.

For many, many years the last place anyone with a serious interest in the ethics of health care would be tempted to look for weighty moral analysis was the Code of Medical Ethics of the American Medical Association.

National coalition for health professional education in genetics.

The mission of the National Coalition for Health Professional Education in Genetics is outlined, and an overview of its relationship to acute and critical care nurses is given.

Shattuck lecture--medical and societal consequences of the Human Genome Project.

  • F. Collins
  • Medicine
    The New England journal of medicine
  • 1999
The history of biology was forever altered a decade ago by the bold decision to launch a research program that would characterize in ultimate detail the complete set of genetic instructions of the