12th edition of my human genetics textbook


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Glenn Nichols, surrounded by his hospice team. The author is in yellow.

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Genetic Linkage

A Proposed DNA Data Protection Act? The Cat’s Out of the Bag

December 20, 2018

Tags: genetic testing, 23andMe, Ancestry.com, genetic privacy, GEDmatch, Golden State Killer

A team of biologists, policy analysts, and legal experts from the University of Queensland call for a new Genetic Data Protection Act in an article just published in Genetics in Medicine.

A new law is needed now, the researchers argue, because of the increasing difficulty of keeping the threads of DNA use separate. “What happens to our genetic data in one realm, such as forensics, is highly likely to affect how society trusts the use of genetic data in medicine. The speed of these developments has surprised many and demands a policy response to protect trust in medical genetics,” they write.

A data protection act is a great idea, but isn’t it a little late? The collision between genetic privacy and the consumer testing data dump that forensics is tapping into is already here. And it may detonate when the millions of DNA kits sitting under Christmas trees right now are translated into information. (more…)

Saving GINA: Is Genetic Privacy Imperiled?

March 12, 2017

Tags: genetic privacy

A bill that passed last week in the House threatens genetic privacy protections put in place with the Genetic Information Nondiscrimination Act (GINA) of 2008. The “Preserving Employee Wellness Programs Act” might instead be called the “telling on relatives” ruling.

GINA

According to GINA, employers can’t use genetic information to hire, fire, or promote an employee, or require genetic testing, and health insurers can’t require genetic tests nor use results to deny coverage. The law clearly defines genetic tests – DNA, RNA, chromosomes, proteins, metabolites – and genetic information –genetic test results and family history of a genetic condition.

GINA refers to a case, Norman-Bloodsaw v. Lawrence Berkeley Lab from 1998, that allowed clerical and administrative workers to sue their employer for requiring testing for “highly private and sensitive medical genetic information such as syphilis, sickle cell trait, and pregnancy” without their consent or knowledge during a general employee health exam. I’m not sure how syphilis and pregnancy got lumped in with sickle cell trait (a carrier), but requiring any such test is considered an illegal search under the Fourth Amendment. The sickle cell request also violates Title VII of the Civil Rights Act by singling out employees of African ancestry. (more…)

instruction
Project to engage students in helping families with rare genetic diseases
Book Club Reader's Guide
Many challenging questions to stimulate thought and discussion.
Instructor's Guide
38 discussion questions to get students thinking and talking about gene therapy, including the science, ethical issues, and the drug approval process.
Narrative science
The Forever Fix is the uplifting true story of 8-year-old Corey Haas, who was cured of hereditary blindness just 4 days after gene therapy.
College Textbooks
A spectacularly-illustrated, clearly written human anatomy and physiology textbook, used in pre-health profession programs throughout the U.S.
A highly engaging, clearly written, beautifully illustrated introduction to the science of human genetics for the non-scientist. Now in its 11th edition, 12th to be published in September 2018.
Nonfiction
An ideal starting point for anyone who wants to know more about genes, DNA, genomes, and the genetic ties that bind us all.

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