Public Opinion about the Importance of Privacy in Biobank Research

Slides:



Advertisements
Similar presentations
Replication Stress Induces Genome-wide Copy Number Changes in Human Cells that Resemble Polymorphic and Pathogenic Variants Martin F. Arlt, Jennifer G.
Advertisements

Novel PMS2 Pseudogenes Can Conceal Recessive Mutations Causing a Distinctive Childhood Cancer Syndrome Michel De Vos, Bruce E. Hayward, Susan Picton, Eamonn.
Nuclear and Mitochondrial DNA Analysis of a 2,000-Year-Old Necropolis in the Egyin Gol Valley of Mongolia Christine Keyser-Tracqui, Eric Crubézy, Bertrand.
Length Distributions of Identity by Descent Reveal Fine-Scale Demographic History Pier Francesco Palamara, Todd Lencz, Ariel Darvasi, Itsik Pe’er The American.
TFIIH Subunit Alterations Causing Xeroderma Pigmentosum and Trichothiodystrophy Specifically Disturb Several Steps during Transcription Amita Singh, Emanuel.
Elevated Frequency and Allelic Heterogeneity of Congenital Nephrotic Syndrome, Finnish Type, in the Old Order Mennonites Stacey Bolk, Erik G. Puffenberger,
Previous Estimates of Mitochondrial DNA Mutation Level Variance Did Not Account for Sampling Error: Comparing the mtDNA Genetic Bottleneck in Mice and.
Connexin Mutations in Skin Disease and Hearing Loss David P. Kelsell, Wei-Li Di, Mark J. Houseman The American Journal of Human Genetics Volume 68, Issue.
Differential Relationship of DNA Replication Timing to Different Forms of Human Mutation and Variation Amnon Koren, Paz Polak, James Nemesh, Jacob J. Michaelson,
Functional Analysis of the Neurofibromatosis Type 2 Protein by Means of Disease- Causing Point Mutations Renee P. Stokowski, David R. Cox The American.
Gene Preference in Maple Syrup Urine Disease Mary M. Nellis, Dean J. Danner The American Journal of Human Genetics Volume 68, Issue 1, Pages (January.
Alternative Splicing QTLs in European and African Populations Halit Ongen, Emmanouil T. Dermitzakis The American Journal of Human Genetics Volume 97, Issue.
A Multilocus Model of the Genetic Architecture of Autoimmune Thyroid Disorder, with Clinical Implications Veronica J. Vieland, Yungui Huang, Christopher.
Genome Scan Meta-Analysis of Schizophrenia and Bipolar Disorder, Part I: Methods and Power Analysis Douglas F. Levinson, Matthew D. Levinson, Ricardo Segurado,
Lever-Arm Mechanics of Processive Myosins Yujie Sun, Yale E. Goldman Biophysical Journal Volume 101, Issue 1, Pages 1-11 (July 2011) DOI: /j.bpj
Genomewide Comparison of DNA Sequences between Humans and Chimpanzees Ingo Ebersberger, Dirk Metzler, Carsten Schwarz, Svante Pääbo The American Journal.
Fragile X and X-Linked Intellectual Disability: Four Decades of Discovery Herbert A. Lubs, Roger E. Stevenson, Charles E. Schwartz The American Journal.
Mutation of the Mitochondrial Tyrosyl-tRNA Synthetase Gene, YARS2, Causes Myopathy, Lactic Acidosis, and Sideroblastic Anemia—MLASA Syndrome Lisa G. Riley,
2002 Air Medical Transport Industry Awards Air Medical Journal Volume 22, Issue 2, Pages (March 2003) DOI: /S X(03) Copyright.
The Duty to Recontact: Attitudes of Genetics Service Providers Jennifer L. Fitzpatrick, Cecil Hahn, Teresa Costa, Marlene J. Huggins The American Journal.
PRIMUS: Rapid Reconstruction of Pedigrees from Genome-wide Estimates of Identity by Descent Jeffrey Staples, Dandi Qiao, Michael H. Cho, Edwin K. Silverman,
Peopling of Sahul: mtDNA Variation in Aboriginal Australian and Papua New Guinean Populations Alan J. Redd, Mark Stoneking The American Journal of Human.
I may not be Southern by birth, but I am proud to be an American: The role of international medical graduates in vascular surgery and the Southern Association.
Susannah Baruch, J.D., David Kaufman, Ph.D., Kathy L. Hudson, Ph.D. 
Position of the American Dietetic Association, School Nutrition Association, and Society for Nutrition Education: Comprehensive School Nutrition Services 
Anna Middleton, J. Hewison, R.F. Mueller 
Transmission/Disequilibrium Tests for Extended Marker Haplotypes
Genetic Landscape of Eurasia and “Admixture” in Uyghurs
Anna Middleton, J. Hewison, R.F. Mueller 
Susannah Baruch, J.D., David Kaufman, Ph.D., Kathy L. Hudson, Ph.D. 
Charmaine D. Royal, John Novembre, Stephanie M. Fullerton, David B
2016 Curt Stern Award Address: From Rare to Common Diseases: Translating Genetic Discovery to Therapy1  Brendan Lee  The American Journal of Human Genetics 
Yu Jiang, Glen A. Satten, Yujun Han, Michael P. Epstein, Erin L
Linkage Thresholds for Two-stage Genome Scans
Medical treatment of ectopic pregnancy: a committee opinion
An Unexpected Role: UVA-Induced Release of Nitric Oxide from Skin May Have Unexpected Health Benefits  Gary M. Halliday, Scott N. Byrne  Journal of Investigative.
Genetics, Individuality, and Medicine in the 21st Century*
Awareness of Altitude Sickness Among a Sample of Trekkers in Nepal
XMCPDT Does Have Correct Type I Error Rates
Barriers to colonoscopy among New York City homeless
GeneTests: Integrating Genetic Services into Patient Care*
Volume 65, Issue 3, Pages (March 2004)
Random-Effects Model Aimed at Discovering Associations in Meta-Analysis of Genome- wide Association Studies  Buhm Han, Eleazar Eskin  The American Journal.
Fertility and Sterility  Volume 98, Issue 5, Pages (November 2012)
This Month in AJKD American Journal of Kidney Diseases
Sang Hong Lee, Naomi R. Wray, Michael E. Goddard, Peter M. Visscher 
Value for Money? Array Genomic Hybridization for Diagnostic Testing for Genetic Causes of Intellectual Disability  Dean A. Regier, Jan M. Friedman, Carlo.
News & Notes Journal of Allergy and Clinical Immunology
Privacy Risks from Genomic Data-Sharing Beacons
Dan-Yu Lin, Zheng-Zheng Tang  The American Journal of Human Genetics 
The SNP Endgame: A Multidisciplinary Approach*
Erratum The American Journal of Human Genetics
Genetically Determined Partial Complement C4 Deficiency States Are Not Independent Risk Factors for SLE in UK and Spanish Populations  Lora Boteva, David L.
Volume 69, Issue 12, Pages (June 2006)
Volume 69, Issue 3, Pages (February 2006)
Jonathan I. Silverberg, Nanette B. Silverberg 
Greg L. Loeben, Theresa M. Marteau, Benjamin S. Wilfond 
Wei Pan, Il-Youp Kwak, Peng Wei  The American Journal of Human Genetics 
Position of the American Dietetic Association: Vegetarian Diets
Victor Almon McKusick, MD, 1921–2008, In Memoriam
How Much Sun Protection Is Needed
Discussion The Journal of Thoracic and Cardiovascular Surgery
Journal of Investigative Dermatology
Alice S. Whittemore, Jerry Halpern 
Anna Middleton, J. Hewison, R.F. Mueller 
Hannah R. Elliott, David C. Samuels, James A. Eden, Caroline L
Zuoheng Wang, Mary Sara McPeek  The American Journal of Human Genetics 
Contact among families who share the same sperm donor
Genomewide Comparison of DNA Sequences between Humans and Chimpanzees
Volume 3, Issue 5, Pages (November 2017)
Presentation transcript:

Public Opinion about the Importance of Privacy in Biobank Research David J. Kaufman, Juli Murphy-Bollinger, Joan Scott, Kathy L. Hudson  The American Journal of Human Genetics  Volume 85, Issue 5, Pages 643-654 (November 2009) DOI: 10.1016/j.ajhg.2009.10.002 Copyright © 2009 The American Society of Human Genetics Terms and Conditions

Figure 1 Percentage of Respondents Who Believe Specific Types of Medical Information Deserve Extra Privacy Protections Percentage of survey respondents who believe that various types of information in a medical record need extra privacy protections, among those who believe that some types of medical information need extra protections (n = 1574). The American Journal of Human Genetics 2009 85, 643-654DOI: (10.1016/j.ajhg.2009.10.002) Copyright © 2009 The American Society of Human Genetics Terms and Conditions

Figure 2 The Relationship between Privacy Concerns and Willingness to Participate in Research When the Benefits of Participation Vary Relationship between concerns about protecting privacy in the large cohort study and willingness to participate in the study, under differing scenarios of study benefits. The American Journal of Human Genetics 2009 85, 643-654DOI: (10.1016/j.ajhg.2009.10.002) Copyright © 2009 The American Society of Human Genetics Terms and Conditions