Think before you spit: ELSI and the Direct-to-Consumer Genetic Testing Space Jan Charbonneau, Dianne Nicol & Don Chalmers Centre for Law & Genetics, University.

Slides:

Advertisements

Similar presentations

BEGIN. HealthShare Contracts with Providers & Purchasers Integrated Service Providers Management Marketing Provides quality care Makes business.

Advertisements

The New Regulatory Policy Landscape Dr Dianne Orr Australian Skills Quality Authority.

Principles of FDA Regulation for In Vitro Diagnostic Tests for Home Use Carol C. Benson OIVD/CDRH/FDA March 9, 2011 Molecular and Clinical Genetics Panel.

Maryam Nazir. Personal Genomics:  Branch of genomics concerned with the sequencing and analysis of the genome of an individual  Once sequenced, it can.

Direct from consumers: A survey of 1,048 customers of three DTC personal genomic testing companies about motivations, attitudes, and responses to testing.

Driving after a Stroke ‘Information on returning to driving should be provided to stroke patients and families before leaving hospital and further supported.

Direct to Consumer Testing Issues. Types of tests being sold Diagnostic tests – identify specific conditions Carrier testing - identify those who carry.

Why Are We Here? The History and Landscape of DTC Genetic Tests Elizabeth Mansfield, Ph.D. OIVD/CDRH/FDA March 8, 2011 Molecular and Clinical Genetics.

Health Line of Business Revised Health Domains January 26, 2005 Outcomes / Domains have been revised.

FDA Panel Comments Adele Schneider, MD, FACMG Victor Center for the Prevention of Jewish Genetic Diseases, Director, Clinical Genetics Albert Einstein.

Center for Education and Research in Information Assurance and Security Second Annual Research Symposium April 2002 The Changing.

Personalized Medicine

EMGO Institute for Health and Care Research Quality of Care Martina Cornel, MD, PhD, professor of Community Genetics & Public Health Genomics PPPC activities.

Capacity Task Force Virginia Health Reform Initiative January 14, 2011

Who is SDOP  A non-partisan, multi-faith organization  Represents 35 congregations and over 50,000 families all over San Diego County  We teach people.

LIMITLESS POTENTIAL | LIMITLESS OPPORTUNITIES | LIMITLESS IMPACT Copyright University of Reading IMPACT AND THE SCIENCES Anthony Atkin (Research Impact.

What is personal genetics? What might it mean for me, my family and society? Personal Genetics Education Project (pgEd) Harvard Medical School

Direct-to-Consumer Advertising of Prescription Drugs: Looking Back, Looking Forward Kathryn J. Aikin, Ph.D. Division of Drug Marketing, Advertising and.

TRANSLATION IN HEALTHCARE CONFERENCE EXPLORING THE IMPACT OF EMERGING TECHNOLOGIES Embedding Biobanks as Tools for Translational Research – Has the Biobank.

The basics about over-the-counter and prescription drugs. 1 Medicine 101.

© 2013 The McGraw-Hill Companies, Inc. All rights reserved. Ch 13 Health Care Trends and Forecasts.

NHS Summary Care Record (SCR) If an Out of Hours doctor is visiting you… If an ambulance is called… If you are taken to A & E…

Managed Care Organizations. Managed Care Continuum Use of Managed Care Techniques Less More Traditional Indemnity Health Plan Traditional with Cost Containment.

100k Genomes Project In December 2012 the Prime Minister announced a programme of Whole Genome Sequencing as part of the UK Government’s Life Sciences.

Integrated Biomedical Information for Better Health Workprogramme Call 4 IST Conference- Networking Session.

Health care costs continue to increase! 40% of US citizens are uninsured! Health Insurance 101 (Managed Care)

Personalized Medicine The Promise of the Genomic Revolution.

1 Positioning Canada as a Global Leader in Healthcare Delivery through ICT Repeatable Public-Private Model May 27, 2013.

Managed Care. In the broadest terms, Kongstvedt (1997) describes managed care as a system of healthcare delivery that tries to manage the cost of healthcare,

Personalized Medicine Dr. M. Jawad Hassan. Personalized Medicine Human Genome and SNPs What is personalized medicine? Pharmacogenetics Case study – warfarin.

Genetic Testing. Testing, Testing… 1,2,3 Genetic testing is most often used to analyze human DNA to determine whether an individual’s genetic makeup indicates.

Knowledge Transfer Accelerating Innovation. slide 1 The Knowledge Transfer Group at the HR Induction Program 21 March 2014 Matteo Castoldi

Knowledge Transfer Accelerating Innovation. slide 1 The Knowledge Transfer Group at the HR Induction Program (session II) 2 nd of December 2014 Giovanni.

Improving Total System Performance & Public-private Partnership Dr. FUNG Hong Hospital Authority May 2001.

Making the law work better for people affected by cancer, their carers and health professionals.

Looking toward the future: Consumer preferences for blood-based screening for colorectal cancer PRESENTER: Dr Ian Zajac AUTHORS: Ian Zajac, Amy Duncan,

Horizon Scanning: future skills and competences of the health workforce in Europe MATT EDWARDS and JOHN FELLOWS WP6, EU JA on Health Workforce Planning.

Time to Embrace Social Media…. (groan) A few reasons why it’s time to shift your thinking…

BILLBOARD MAIL A Patented Direct Mail Piece. Advertisers purchase space on an envelope using it as their Billboard which subsidized the stamps cost. Billboard.

 Agreed upon fees paid for coverage of medical benefits for a defined benefit period. Premiums can be paid by employers, unions, employees, or shared.

100k Genomes Project Programme of Whole Genome Sequencing, part of UK Life Sciences Strategy Aim to sequence 100,000 genomes from patients with cancer.

2 Is the #1 geo-targeted digital media company in the world Operates more than 500 city specific healthcare websites: –i.e.

Objectives Identify different types of health care facilities. Describe a typical hospital organizational structure. Identify hospital departments and.

Jan 2002 EDMA The central role of the Medical Laboratory in a World of Managed Health An EDMA presentation of the benefits of in vitro testing as a basis.

SENIOR AUSTRALIANS AND PRESCRIPTION MEDICINES Australian Association of Gerontology NSW 30 August 2013.

Given the progress that continues to be made in society’s battle against disease, patients are seeking more information about medical problems and potential.

Health Care Providers and Services In this lesson, you will Learn About… The goals of health care. The types of health care providers and facilities. The.

100,000 Genomes Project North East and North Cumbria GMC An Introduction Mike Pratt (Genomic Education Development Officer) Susan Goldstein (100,000 Genomes.

The Problem Registrar Dr Kevin Hill Deputy Postgraduate GP Dean East Midlands Healthcare Workforce Deanery.

The opportunities and challenges of sharing genomics data with the pharmaceutical industry Shahid Hanif, Head of Health Data & Outcomes, ABPI DNA digest.

Health Management Information Systems Consumer Health Informatics Lecture a This material Comp6_Unit8a was developed by Duke University, funded by the.

1 Copyright © 2012 by Mosby, an imprint of Elsevier Inc. Copyright © 2008 by Mosby, Inc., an affiliate of Elsevier Inc. Chapter 11 Genomics in Public Health.

Introduction to Health Policy and Law Jody Blanke Distinguished Professor of Computer Information Systems and Law Mercer University.

Health Care Providers and Services In this lesson, you will Learn About… The goals of health care. The types of health care providers and facilities. The.

European Patients’ Academy on Therapeutic Innovation Challenges in Personalised Medicine.

Joseph C. Kvedar Director, Telemedicine Partners HealthCare Systems

Health? Normal? Medicalization /layification Internet – no gatekeeper Speed – algoritms -> reactive health care Risk calculators.

What Are Clinical Trials?

Namibian Association of Medical Aid Funds

[Conference Title] [Date]

Genomic Medicine Centre Overview

Data Access and Stewardship

100,000 Genomes Project & Mainstreaming Genomic Medicine

Health Care Law and Compliance

CROATIAN HEALTH INSURANCE FUND

MEDICAL SCRIBING. 2 WHAT IS MEDICAL SCRIBING? 2 Medical Scribing training is profound idea in the modem healthcare sector. The emergence of electronically.

Building trust and understanding in data sharing

Meeting with EG PHC Ev. underrubrik Förnamn Efternamn.

How Is Precision Medicine Transforming The Health Care Industry?

Our Long Term Plan Emily Beardshall – Deputy ICS Programme Director

Presentation transcript:

Think before you spit: ELSI and the Direct-to-Consumer Genetic Testing Space Jan Charbonneau, Dianne Nicol & Don Chalmers Centre for Law & Genetics, University of Tasmania

This research has three main components 1 – mapping the direct-to-consumer genetic testing space 2 – determining what drives likelihood of purchase Swinburne Monitor – assessing consumer engagement with DTC Qualtrics Online Panel 2015 Acknowledgement: This research is funded by the Australian Research Council Discovery Grant Personalised Medicine in the Age of Genomic Medicine DP

Patient Medical Gatekeeper Financial Gatekeeper Quality Gatekeeper Government & Professional Oversight Legal System Regulations DTC Genetic Testing represents a paradigm shift from … To …

Consumer DTC Company DTC Certified Practitioner / Healthcare Professional Over the Counter Healthcare Professional T D R AR T T D R TDR T R D A Company Lab Contract Lab R D A DNA Sample ResultsAdvice T Test Kit Regulations Legal System

Confidence in DTC 30% were confident the company would provide all information needed for healthcare decisions. 42% were confident in their ability to interpret genetic test results. 35% were confident DTC tests are accurate. 43% were confident genetic information would only be shared with permission.

Consumer Online Sharing RR Raw Data R Online Interpretation Raw Data DTC Testing or Sequencing Company R Results Researcher DTC / Company Care to Share?

Online behaviours 61% – would go online to better understand DTC results – 54% Actual behaviour - 80% looked for health-related information online in last 12 months 57% used the Internet for self-diagnosis 35% – would go online to find others with similar test results – 34% 35% – would go online instead of visiting their doctor – 34% 19% – would share genetic information in online communities – 19% Actual behaviour - 27% shared health-related information online 20% shared genetic information online Diabetes Colorectal Cancer

Consumer / Research Participant DTC Company Partner/ Affiliated Company Healthcare Professional T D R A R R D R R D A DNA Sample ResultsAdvice T Test Kit DTC / Company / Researcher R Company Lab Contract Lab Spit for Science?

DTC Research 47% were happy for the DTC company to make their genetic test information available at no cost to university researchers. 43% were happy for the DTC company to use their genetic test information for their research even if they get no financial or other benefit. 25% were happy for their genetic test information to be sold for profit by the DTC company to anothe r company for their research.

Likelihood of Purchase 29% were likely to purchase a DTC test from an onshore company. 17% were likely to purchase a DTC test from an offshore company. 38% were likely to purchase a DTC test if the results were returned to their doctors Monitor indicated likelihood of purchase increased if condition was life threatening & there was available treatment

Consumer Company R R Patient Doctor R Results Spot the ELSI!

Thank you! Questions?