genomics & society

Tell Us What You Think!

Posted by Myra I. Roche on March 7, 2012

What do you think about students using their own DNA for classroom activities ?  Click to vote in the poll,

Read the rest of this entry »

Posted in Education, Ethics, Infomed Consent, Sequencing | Tagged: , | 7 Comments »

Student Use of Their Own DNA in Classroom Activities

Posted by Myra I. Roche on March 7, 2012

Last week, our ELSI reading group began a series of three sessions devoted to the controversial issue of whether or not students should be encouraged/allowed to use their own DNA in classroom activities. Dr. Kelly Hogan, a senior lecturer in the Department of Biology, became interested in this topic when, after discussing the availability of direct to consumer (DTC) testing with her class, two of her students decided to ante up and have their genome sequenced. One wrote about her experience in this post last December. And the other students? The best guess was that it was only the $200 price tag that deterred them from diving headfirst into their own gene pool.  Some instructors believe that if students have access to their own genetic data, they will become more engaged and learning will be enhanced.  But, as the University of California-Berkeley found out last year, sponsoring this kind of engagement has its own price. Read the rest of this entry »

Posted in Education, Ethics, Infomed Consent, Sequencing | Tagged: , | Leave a Comment »

Genotype-driven research recruitment: Explanations, experiences, ethics

Posted by Marsha Michie on January 12, 2012

Several of us at the Center for Genomics and Society have been working on a project about genotype-driven research recruitment. What’s that, you ask? Well, I have made a self-guided presentation via Prezi.com that explains it and talks about some of the issues we examined.

[SEE VIEWING INSTRUCTIONS BELOW]

Click on the right arrow (bottom of presentation) to prompt it to load – this may take a few moments. The word “More” should appear beside the right arrow. Click on “More” and then choose “Fullscreen” for best viewing. Use the right arrow to guide yourself through.

Or click this link to see the original:

http://prezi.com/kpgbnmxqhdod/genotype-driven-research-recruitment/

Posted in Education | 4 Comments »

And What Would You Like for Christmas?

Posted by Myra I. Roche on December 21, 2011

As I reported in my last post, an estimated 30,000 genomes will have been sequenced by the end of the next week. One of these belongs to a new guest contributor, Kiri Sunde, a UNC-CH undergraduate who majors in quantitative biology and mathematics. What could prompt a science-savvy, young woman to spit in a tube and mail her DNA off to 23 and Me? Was it curiosity about her possible pre-disposition to her family’s chronic diseases,  a professor’s assurance that it was good for him, the perfect Christmas present, or ultimately, because the price ($100) was finally right? Did her knowledge of genetics or her curiosity play the bigger role? Find out by reading her post, which can be found here.

Speaking from a different generation and from a different perspective, Dr. Kelly Hogan, a senior lecturer in the Department of Biology at UNC-CH, pondered the same question but made a very different choice. Was her scientific knowledge as a human genetics professor a barrier? Or did it simply come down to a different collection of life experiences? Would her decision have been any  different if sequencing had been available when she was 20? Her decision and the factors influencing it can be found in her post, below and here.

Thanks to both of them for sharing their stories.

Posted in Genetic Testing, Sequencing | Tagged: , , | Leave a Comment »

Dear Santa,Just Bring Chocolate

Posted by Kelly Hogan on December 21, 2011

I was invincible.

How else can I explain to myself the risks I took when I was younger? I played roller hockey on in-line skates when I was not a capable skater. I went scuba diving to depths that now make me shiver when I think about the experience.  I took a ride after a party from a driver who likely had too many drinks. I did all of these things when I was college-aged.

And then… Stitches in the gaping roller hockey wound on my chin days before my picture-perfect wedding, news about drunk teens wrapping themselves around telephone poles, a friend who didn’t beat the odds with an aggressive cancer, a “modern medical system” that failed patients, the university student president murdered, my own mortality considered laying in a hospital bed. Read the rest of this entry »

Posted in Genetic Testing, Sequencing | Tagged: , , | Leave a Comment »

All I Want for Christmas Is My Genome Sequenced

Posted by ksunde on December 21, 2011

Written by: Kiri Sunde, an undergraduate Carolina Scholar at UNC-Chapel Hill, majoring in Quantitative Biology and Mathematics:

Nineteen ninety was a big year for me; I was born.  It was also a big year for the world of human genetics – the year the Human Genome Project was initiated.  Completed in 2001, the publically funded project cashed in at $3 billion.  Now, just a decade later, I have had one million SNPs across my genome sequenced for under $100.

As a biology major with a strong interest in medical genetics, I had been following the personalized genetic medicine movement from a safe distance for several years.  When I took Dr. Hogan’s introductory genetics class in 2009, I learned that it would not be long before individuals could have their entire genome sequenced for under $1000.  At the time, the idea seemed entirely abstract.  It did not really occur to me that, before I graduated from college, I could have my own genome sequenced, at least not until one of my professors mentioned a few months ago that he sent his DNA sample to the “boutique” genotyping company 23andMe and reported a positive experience.  This idea was no longer purely theoretical, and the prospect of decoding my own DNA was too enticing to resist. Read the rest of this entry »

Posted in Genetic Testing, Sequencing | Tagged: , , | 3 Comments »

Pace of Human Sequencing Far Exceeds Everything Downstream Including Genetic Counseling

Posted by Myra I. Roche on December 2, 2011

While keeping in mind the dictum that correlation does not imply causation, yesterday’s New York Times reported two trends that are pretty clearly causally related: the number of human genomes expected to be sequenced by the end of the year (30,000) and the precipitous plunge in the cost per genome ($8.9 million in 2007 to today’s bargain basement price of $10,500). According to the article, China’s BGI,  the world’s largest genomics research institute, is churning out 2,000 human genomes a day. The world’s capacity to generate sequence was quoted as 13 quadrillion (13,000,000,000,000,000) DNA bases per year.

Data Delivery by Rickshaw?
But while sequencing has quickly transitioned to a high-throughput operation, downstream events, like storage, interpretation, and communication of results, have been unable to ramp-up enough to cope with, let alone keep up with, this deluge of data.  The Times article focused primarily on storage capacity and retrieval painting a quaint image by revealing that BGI transmits the data back to their clients using, not the poky Internet, but rather, on discs, using old-reliable, FedEx; presumably brown shorts and all (or is that UPS?) Read the rest of this entry »

Posted in Genetic Counseling, Sequencing | Tagged: , | 4 Comments »

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 »