By Karen H. Rothenberg JD MPA, Lynn Wein Bush PhD MS MA
By using dramatic narratives, The Drama of DNA brings to lifestyles the complexities raised by way of the applying of genomic applied sciences to well-being care and prognosis. This inventive, pedagogical technique shines a different gentle at the moral, psychosocial, and coverage demanding situations that come to be finished sequencing of the human genome transitions from learn to medical medication. Narrative genomics goals to augment knowing of the way we assessment, approach, and percentage genomic details, and to domesticate a deeper appreciation for tricky judgements encountered via wellbeing and fitness care execs, bioethicists, households, and society as this know-how reaches the bedside.
This cutting edge publication comprises either unique genomic performs and theatrical excerpts that remove darkness from the consequences of genomic details and rising applied sciences for physicians, scientists, counselors, sufferers, blood kin, and society. as well as the performs, the authors supply an analytical starting place to border the various demanding situations that regularly come up.
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Extra resources for The Drama of DNA: Narrative Genomics
DR. NEUROW: Let’s look at it another way. Wouldn’t it be a greater risk not to have the complete picture of variants from the kids and parents? This short dialogue between IRB members reflects the challenges of having to balance benefits and risks in new areas of genomic research in which medical and psychosocial implications are yet to be understood and difficult to quantify. A starting point may often be an evaluation of inclusion criteria. /Ms. Pigene responds that both affected and neurotypical would meet the criteria for inclusion.
Also, how do you quantify the risk of discrimination and the reach of protection when more and more genomic information may be finding its way into the medical record?
That includes you, too, Sam. SAM: How can I help them if I don’t have their bad gene? The diagnostic odyssey that frequently accompanies rare genetic disorders in children raises special challenges for the pediatric geneticist who often is involved in genomic research. The graying of these roles as both the clinician and researcher heightens the likelihood of the therapeutic misconception and colors the objectivity of risks and benefits when patients and families are recruited by clinical genetic professionals for genomic research studies.