genomics & society

Archive for November, 2011

CGS Seminar: “Gifts of the Body: Expectations of Cancer Patients Involved in a Whole Genome Sequencing (WGS) Study

Posted by Dragana Lassiter on November 29, 2011

On Tuesday, November 15th, 2011, CGS trainees, Rachel Haase and Marsha Michie with CGS investigator, Debra Skinner, presented data from the whole genome sequencing (WGS) experience of cancer patients at UNC under the direction of CGS investigators, Jim Evans and Jonathan Berg, and Kristy Lee, the certified genetic counselor on the team.  The seminar was titled “Gifts of the Body: Expectations of Cancer Patients Involved in a Whole Genome Sequencing (WGS) Study.”  The analysis of gift-giving reveals complex interrelationships between the two seemingly contradictory motives of self-interest and altruism and has important implications for recruiting individuals into these studies.  Read the rest of this entry »

Posted in Ethics | 5 Comments »

Whole Exome Sequencing: The NIH Experience

Posted by Myra I. Roche on November 28, 2011

In a new post, CGS trainee, Dragana Lassiter, summarizes the discussion of the November, 2011 CGS Seminar entitiled: “Gifts of the Body: Expectations of Cancer Patients Involved in a Whole Genome Sequencing (WGS) Study” that was presented by CGS trainees, Rachel Haase and Marsha Michie along with with CGS investigator, Debra Skinner.   Dragana discusses how the anthropological perspective of the meaning of gifts can provide a way to explain why individuals may consent to participate in research studies involving sample donation.  Many centers are now enrolling patients in studies that sequence either the whole genome (WGS), the exome (largely the coding sequences) (WES) or use a combination of approaches including SNP arrays.   But what has been learned about the process, so far? Read the rest of this entry »

Posted in Genetic Counseling, Genetic Testing, Sequencing, Uncategorized | 2 Comments »

Health Literacy and Communicating Genomic Information

Posted by Myra I. Roche on November 1, 2011

In a previous post,I focused on how parents’ health literacy impacts their ability to understand and search for genetic information.  This post turns the tables and examines the influence of health literacy on the way health care providers communicate risks.  Does health literacy, or more specifically, numeracy, defined as the ability to use and understand numbers, affect the way physicians communicate risk information?  Using maternal serum screening for Down syndrome as the example, a recent article in Genetics in Medicine looked at how the perceived ease with numbers influenced the communication style of obstetricians and gynecologists who routinely offer this screening.  The article “Physicians’ communication of Down syndrome screening test results: The influence of physician numeracy” can be found here.   The questions asked were: how did these physicians present risks information and did their communication style correlate with their perceived (and actual) numeracy? Read the rest of this entry »

Posted in Health Literacy | 2 Comments »