1 Information for patients and the public and patient information about DNA / Biobanking across Europe BIOBANKING / DNA BANKING SUMMARY: A biobank is a store of human biological material, used for the purposes of research. Some of these are specifically for research into genetic diseases and conditions. Information about the causes of disease is generated by analysis of the stored samples, and treatments for them are developed using this information. The Declaration of Helsinki on Biobanking states that biobanks must take donors through a process of informed consent before accepting samples. Donating samples for a biobank is not dangerous or painful Biobanking / DNA banking What is a biobank? Why do biobanks exist? What are the different types of biobanks, and where are they? Some common aims of biobanks Is it safe to join a biobank? What permission do biobanks need from me in order to do research? Can I say no to the use of my samples in particular types of research? Will I be told about my results? Who will be able to see information about me held in a biobank?
2 Will the police be able to get access? Will insurance companies be able to get access? Can I leave a biobank after I have joined one? Intellectual property and ownership of DNA samples Where do population-based biobanks exist? Can healthcare companies pay to see public sector biobanks? Why does a biobank need my sample, and samples from so many people? How long are biobanks set up to run for? What happens when they close down? Biobanking procedures across Europe What is a "cohort study"? Why do some biobanks look to recruit families, some twins and some just take individuals who volunteer?
3 What is a biobank? Sometimes a DNA sample may be taken from you in the course of your treatment. These samples are often stored and may be used to carry out other research as well, if you give your permission for this to be done. Stores of biological material are called 'DNA Banks' or 'Bio Banks'. There are many biobanks of different kinds around Europe, and as an example, Follow this link for the website of the UK biobank: Follow this link for information on European biobanks: There are biobanks all over the world, and not just in Europe. The 'P3G' consortium is a group which has compiled information about many different biobanks across the world, and detailed information about them can be found at their website. The project aims to help with the harmonisation of different procedures carried out by the various biobanks, in order to help make research more efficient and protect the interests of potential research participants. You can find out more by visiting the website of the P3G consortium: If you donate a DNA sample to a biobank, it only involves donating a small amount of biological material, and is not a serious or invasive procedure. A sample could take the form of a swab of your saliva, it could be a small blood sample, it could be a scraping of skin cells, or it could be a small sample, or 'biopsy' of a tumour or affected part of the body. A sample might be taken for a test as part of a regular medical procedure, or you may have been asked if you would like to participate in research by donating a biological sample for research. Virtually all medical specialties, not just genetics, store and analyse human biological material in order to advance knowledge and develop new treatments. This
4 means that 'biobanking' is not really a new development. It has been brought into view particularly in recent years, partly as a result of the high-profile work done in the decoding of the human genome. There are also biobanks created specifically for research, instead of from samples from patients who are already receiving treatment. Some countries even have biobanks developed on a national scale for this purpose. Why do biobanks exist? Biobanks are set up so that researchers can examine DNA and try to establish how faults in DNA cause diseases. Once research programs can work out the cause of different diseases and conditions, they can use this knowledge to begin to develop treatments or cures that can improve or save the lives of those affected. Biobanks may also be set up for storing biological samples such as bone marrow from an individual, so that in the event that they develop a serious disease - Leukaemia for example - the healthy stored cells can be used for transplant in order to help them overcome the disease. What are the different types of biobanks, and where are they? There are many different types of biobanks, found in different kinds of insitutions depending on what kind of research the organization carries out. Some biobanks can be found in educational institutions such as university hospitals. Often the collections of material will have grown naturally from samples being taken from patients in the course of treatment. Other biobanks are set up by independent research companies or drug companies, who are carrying out research and development into new treatments.
5 More recently, several countries have set up national biobanks, holding the biological data of up to several hundred thousand people. These biobanks try to encourage members of the public to donate samples, instead of just taking their samples from patients who are being treated. If you have been asked if you would like to donate a DNA sample to a biobank, those asking you will be able to tell you what the purpose of their biobank is. Some common aims of biobanks Treatments for the most common genetic disorders Some genetic diseases are quite common and affect large numbers of people, for example, some forms of cancer. 1 in 3 people will develop cancer at some point in their lives, and some of these have genetic causes. More research is needed in order to find out more about how to treat and prevent these effectively. Personalised medicine 'Personalised Medicine' is treatment that is tailored to the particular genetic makeup of the individual receiving it. Humans are all similar, but there is a lot of genetic variation between individuals. Treatment that works well for one person, may not work so well for somebody else. Further research is needed in how to develop effective personalised medicine regimes.
6 Stem cell research Stem cells possess significant potential for the treatment and curing of a wide range of genetic conditions. Stem cells are the body's 'building blocks', and can be manipulated to turn into any kind of cell from the body. This means that they may be used to treat a huge range of conditions. Some people may wish for their stem cells to be stored in case they need to use them in the future as a treatment, should they develop a genetic disorder. In any case, further research is needed to unlock the full potential of stem cells and develop new and effective therapies. Health surveys We need to understand better how genetic diseases affect people as their illness progresses. If we improve our understanding of the way in which different diseases progress, then more effective and appropriate resources and treatment can be put into place. To be able to develop treatment depends on carrying out research with comprehensive collections of DNA samples, collected from those affected by different disorders.
7 Environmental factors There are many diseases which can be caused or brought on by 'environmental' factors, and these may influence how the disease will affect a person. Asthma and diabetes are two examples of conditions such as this. It is important to examine how things like background air pollution, or use of alcohol, affect the development of diseases in different individuals, and how these factors interact with a person's genetic make-up to cause disease. Age demographic databases Many countries have an 'ageing population'. This is where a growing percentage of the population is elderly. Healthy ageing is an important area of research to improve the lives of elderly people, and because they are economically inactive, but heavy users of healthcare. Is it safe to join a biobank? Joining a biobank by donating a DNA sample is not dangerous. The procedure carries the same risk as, for example, any minor cut which punctures the skin. There is only a very small chance of an infection being introduced into the body. What permission do biobanks need from me in order to do research? If you donate DNA samples to a biobank, the biobank or researchers requesting your participation will need your permission, or 'consent' in order to take the samples and use them for a particular purpose. Although samples cannot be taken or used without your permission, if you agree to give 'blanket' consent, you may not be told how they are used in the future for
8 further research. The kind of consent you give therefore limits the research that may be done using your samples.. The P3G website has an example of a generic consent form, of the type that you may be asked to sign when agreeing to donate samples for research: Can I say no to the use of my samples in particular types of research? This should be discussed with you when you are making a decision about whether or not to donate a sample to a biobank. In theory, the answer is yes. However, in some cases, because of the potential difficulties in tracing research participants, it may be too complex for most biobanks to offer you the choice of opting out of some types of research. Instead you may prefer to choose not to volunteer. Will I be told about my results? This should be discussed with you when you are deciding whether or not to donating your sample to the biobank, but generally participants are not told results of biobank research. If the study you are involved with is one where the DNA samples are coded or anonymised, then there may be no way for you to find out your results, even if you would like to find out. A health professional such as a doctor, or a researcher carrying out the study must tell you what form the research will take before you agree to donate a sample. Whether or not the results of research using your DNA samples are transmitted back to you depends mainly on the particular study being carried out. If the results are offered to you, it is also up to you to decide whether or not you wish to receive them.
9 Who will be able to see information about me held in a biobank? If you are going to participate in a biobank, the researchers or health professionals taking the samples should always tell you who will have access to their information. Usually just the organization that takes your sample will know personal details such as your name and address. Will the police be able to get access? The collections of samples in most biobanks are anonymised so there is no way to ever link an identifiable individual to a particular set of data. Also biobanks contain confidential information and so are inaccessible by the authorities, except in the most extreme cases where there is a specific public safety concern. Will insurance companies be able to get access? If you are considering taking part in a genetic research study, one question you may have is whether or not insurance companies will be able to access personal genetic information about you. Whether or not insurance companies are entitled to know personal genetic information, and whether or not you are obliged to tell them varies depending on the way in which you discovered that you have a condition. Diagnostic testing If you discovered that you are a carrier of a diseased because you were exhibiting symptoms of illness and were tested for a diagnosis, then you are obliged under UK law to provide this information to insurers. Predictive testing
10 If you found this information out because a member of your family had a condition and you got a test to find out whether or not you will as well, then you are similarly obliged to tell your insurer. Genetic research The situation is different for information discovered in the course of genetic research. You may be a member of the public who was not undergoing medical treatment but decided independently to participate in a research study. You may have discovered coincidentally through the study that you are a carrier of a disease. In cases like this, you are not obliged to tell your insurers of your condition. The issue of insurance is one that has already been noted by governments and legislative bodies. The World Health Organisation has recognised that participants in research, who may suffer from a disorder, are in a vulnerable position in relation to insurers, and therefore discourages these participants from granting insurers access to their genetic information. This is only an issue however in cases where DNA samples have not been anonymised and the donor is still identifiable. Where the samples have been anonymised and there is no danger of identification, there would be no personal information for an insurance company to use. Can I leave a biobank after I have joined one? This depends on the biobank and on what you agree when you join. The right to withdraw consent, and the implications of doing so, should be fully explained when you provide a sample for the biobank. Whilst you may have the right to withdraw consent, sometimes it may be impossible for biobanks that anonymise samples to be able to identify your particular sample, in order to destroy it. Withdrawal is only possible if anonymization has not happened. Also, if your samples have already been analysed, it is likely to be impossible to erase results from databases or reports that may have already been issued.
11 Intellectual property and ownership of DNA samples This can be a complex issue. Once DNA samples have been given to the biobank, both the biobank and the donor can legitimately claim the samples as their property. However, the European Union Database Protection Directive was devised in 1995 to act as a guideline for how personal data should be used. You can see the website by visiting this link: The general practice in Europe is that DNA data belongs to the researcher or team that creates it. The person who donated the DNA has no legal entitlement to the research or the data produced by it. Where a drug or therapy is developed from research carried out using donated DNA samples, the organisation that developed the treatment can claim ownership of the product they have created. To do this they will often apply for a patent of the treatment so that they have the rights to its production. Acquiring a patent for something is known as gaining 'intellectual property rights' to it. So that the research participants who enabled the research to go ahead are reimbursed for their donation, and can benefit from their investment in the research as well, the research organisation can offer benefits in a range of ways. These are explained fully in the section entitled 'Access and benefit sharing'. Pharmaceutical companies Drug manufacturers invest in research and development of new drugs to treat a huge range of disorders. The decoding of the human genome has created new potential for medicines to target the specific genetic make-up of the person with the disease. Also known as 'pharmacogenetics', research and development may offer the possibility of genetic treatments tailored for specific individuals. Increasingly effective medicines can be developed by minimising side-effects and maximising the efficiency of a treatment program. DNA research is necessary to achieve these goals.
12 Drug companies recruit their own volunteers to take part in clinical trials, though they may also wish to use data collected by public or other private research organisations. Once again, this will vary from study to study. You, as a potential DNA donor, are of course entitled to make a decision on whether or not to submit samples, on the basis of the information provided to you by researchers or your doctors. While you may be concerned about large pharmaceutical organisations having access to your DNA data, they are obliged to follow strict international standards of privacy and confidentiality. Where do population-based biobanks exist? There are several large public population-based biobanks. National population-based biobanks now exist, or are being developed, in Estonia, Canada, Iceland, Japan, Latvia, Singapore, Sweden and the United Kingdom, among others. Whereas some of these biobanks involve the compilation of genetic, life style and genealogical information, other biobanks are more extensive, with links to individual medical records. These large biobanks range in size, seeking from 60,000 to as many as a million volunteers. Can healthcare companies pay to see public sector biobanks? Some biobanks make their samples and/or data available to any interested researchers, whether from the public or commercial sector. It is also possible that the public sector biobank will charge researchers a fee for having access to their samples and/or data. Why does a biobank need my sample, and samples from so many people? This is done in order to ensure the accuracy of results. In genetics, most researchers that use the samples stored in biobanks try to investigate the causes of inherited diseases. They do this by looking at defects or 'mutations' in a person's DNA structure. When trying to find out what causes a
13 disease, it might be that a certain mutation keeps appearing in those with the disease when their DNA is analysed. The more a mutation occurs in these people when compared against people without the condition, the greater certainty there can be about what causes the disease. Therefore the more DNA data there is to begin with, the greater the chance of finding these root causes. This in itself is important as the more knowledge researchers can find out about what causes a disease, the more can be known about what will be needed in therapies to treat or prevent it. How long are biobanks set up to run for? Most biobanks are established with the intention of lasting for a long period of time, usually many years. However, it is possible that some tissues will deteriorate after prolonged periods of storage. This deterioration will mean that the samples are no longer of any value to researchers. The biobank is likely to have a policy of disposing of material after storage for a period of, for instance, 10, 20 or 30 years. In some countries legislation exists on the period of time that samples and data can be stored. What happens when they close down? If a biobank was created for a specific purpose that no longer has relevance, or if the establishment hosting the biobank closes, then the samples stored in the biobank should all be destroyed. In some cases, samples would be transferred to another host organisation. In such cases the accepting organisation must continue to protect the privacy of the sample donor, and ensure that they comply with the terms of consent given by participants that originally donated their tissues.
14 Biobanking procedures across Europe If you are in the European Union and wish to find out information regarding data privacy in your own country, links to individual nation's Information Commissioners offices can be found via this link: The EuroGenGuide cannot legally make these countries act in a particular way, so it is for you to discuss with your clinicians / researchers whether you wish to be involved with research studies that operate internationally across these countries. Some people have concerns about submitting personal data that could be seen by a third party. However, in spite of this many thousands of people have been willing to donate samples to biobanks. What is a "cohort study"? A Cohort Study is a study in which patients who have a certain condition and/or receive a particular treatment are followed over time and compared with another group who are not affected. For instance, the effect of smoking on health could be studied by following two groups, the first of people who smoke and a second of people who do not. The study would then follow both groups over time to see what health problems, if any, they develop. Why do some biobanks look to recruit families, some twins and some just take individuals who volunteer? Genetic information has provided the key to unlocking the mysteries of many diseases. The study of one single family can reveal important information on genetic differences. Since the genetic differences within one family are relatively small, this increases the chance of identifying important differences that lead to some people having the condition.
15 Identical twins have identical genes. So any biological differences between twins must be the result of environmental factors, such as their diet. Twins therefore provide a powerful tool to study the impact of nature versus nurture for many conditions.
Guidelines for health professionals about DNA / Biobanking in Europe BIOBANKING SUMMARY A "biobank" is a: "service unit, non-profit organization for the collection and preservation of biological material
Consultation Response Medical profiling and online medicine: the ethics of 'personalised' healthcare in a consumer age Nuffield Council on Bioethics Response by the Genetic Interest Group Question 1: Health
University Hospitals Birmingham NHS Foundation Trust The Trust provides free monthly health talks on a variety of medical conditions and treatments. For more information visit www.uhb.nhs.uk or call 0121
National Cancer Institute U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health How You Can Help Medical Research Donating Your Blood, Tissue, and Other Samples You have the choice
Cord blood for the treatment of acute lymphoblastic leukemia in young children By Caitlin McGreevy Kiara Paramjothy Pass with Merit RESEARCH PAPER BASED ON PATHOLOGY LECTURES AT MEDLINK 2011 1 Abstract:
Consent Form: Example 2 (DNA Sequencing) Important note: This model language was developed for the NHGRI Medical Sequencing Project (MSP). It is included here only as an example of how to describe a sequencing
Cord blood banking: information for parents Published August 2006 by the RCOG Contents Page number Key points 1 About this information 2 What is cord blood? 2 Why is cord blood useful? 3 How is cord blood
SAVE A LIFE... BY GIVING LIFE! FOLLOW US ON: HÉMA-QUÉBEC PUBLIC CORD BLOOD BANK www.hema-quebec.qc.ca Scan this code with your smart phone to access the page Register to the Public Cord Blood Bank on the
Clinical Trials: Questions and Answers Key Points Clinical trials are research studies that test how well new medical approaches work in people (see Question 1). Every clinical trial has a protocol, which
What are Stem Cells? How can they be used in medicine? What is a stem cell????... What is a stem cell????......a cell with the ability to differentiate into specialized cells and renew to become more stem
A Gift for life HTA Licence No. 22653 2 3 the best possible gift for your new born child. 4 6 8 9 10 12 14 16 19 what is cord blood current treatments services contents properties for treatment process
Q: Why is there a need for people to join the Be The Match Registry? A: Thousands of patients with blood cancers like leukemia and lymphoma, sickle cell and other life-threatening diseases depend on the
BIO INFOBK 1492 0410:Layout 1 21/04/2010 15:24 Page 1 INFORMATION LEAFLET You are being invited to take part in a major medical research project called UK Biobank. The purpose of UK Biobank is to set up
[Track 2: What Is a Transplant?] Narrator: Transplants using stem cells from the blood, bone marrow or umbilical cord blood can be an effective treatment for people with blood cancers such as leukemia,
G-2d 2 Consent for Clinical DNA Sequencing Iowa Institute of Human Genetics Contact: Richard JH Smith, MD; Colleen Campbell, PhD, MS, CGC DATE HOSP.# NAME BIRTH DATE This consent form describes the clinical
CONSENT TO PARTICIPATE IN A CLINICAL RESEARCH STUDY Adult Patient or Parent, for Minor Patient INSTITUTE: National Cancer Institute PRINCIPAL INVESTIGATOR: Raffit Hassan, M.D. STUDY TITLE: Tissue Procurement
Inside How accurate are the tests? 2 How useful are the tests? 2 What can Direct-to-Consumer DNA genetic tests tell me? 2 What happens to my personal information? 3 What protections are there in Australia?
EDITORIAL : VOL 14 ISSUE 1 BSLR 3 Much has been written about the potential of data mining big data to transform drug development, reduce uncertainty, facilitate more targeted drug discovery and make more
CONSENT FORM TEMPLATE Derivation and Distribution of Induced Pluripotent Stem (ips) Cell Lines Created from Donor Specimens INTRODUCTION We invite you to take part in a research study at [name of research
A Guide to Clinical Trials For young people with cancer and their parents Children s Cancer and Leukaemia Group www.cclg.org.uk Original booklet produced in conjunction with the CCLG Patient Advocacy Committee.
The Liver and Alpha-1 Antitrypsin Deficiency (Alpha-1) 1 ALPHA-1 FOUNDATION What Is Alpha-1 Antitrypsin Deficiency? Alpha-1 is a condition that may result in serious lung disease in adults and/or liver
Genetic Tests for Health Purposes Genetic Tests for Health Purposes We have all inherited a unique combination of genes from our parents. This original constitution and the influence of various environmental
APPENDIX B SAMPLE INFORMED CONSENT FORM B.1 INFORMED CONSENT TO PARTICIPATE IN A RESEARCH STUDY Umbilical Cord Blood Banking for Transplantation You are being asked to take part in a research study that
Tuberculosis Risk Factors Study Participant Information Leaflet (Healthy / Control Volunteers) Introduction Please read this information leaflet about the study before you decide whether or not to take
Roche Position on Human Stem Cells Background Stem cells and treating diseases. Stem cells and their applications offer an enormous potential for the treatment and even the cure of diseases, along with
Tissue Banking Advancing Cancer Care Acknowledgments Producer Director Writer Photographer Designer Christina M. Parker, MD Dana-Farber Cancer Institute, Inc. David H. Rose POV-Rose Films Lonnie K. Christiansen
Policy Directive Ministry of Health, NSW 73 Miller Street North Sydney NSW 2060 Locked Mail Bag 961 North Sydney NSW 2059 Telephone (02) 9391 9000 Fax (02) 9391 9101 http://www.health.nsw.gov.au/policies/
Personalised Healthcare Frequently Asked Questions Foreword In one sense, personalised healthcare is nothing new. It is what doctors have aimed to provide for their patients through the exercise of their
Introduction Welcome to the NeurOmics project newsletter. This is the second edition and comes after the project has been underway for just over a year. This means that whilst we still have lots of work
Concordat and Moratorium on Genetics and Insurance 2014 Preface The Concordat and Moratorium on Genetics and Insurance has been updated to reflect the agreement s extension until 2019. The interim review
PARTICIPANT INFORMATION IMPERIAL POPULATION BIORESOURCE TISSUE BANK (PART OF NIHR BIORESOURCE) In the UK around 20 million people are said to be living with a long-term condition such as diabetes or heart
Phasel clinical trials: what are they all about? Information for people wanting to know more about early clinical trials in cancer, Belfast City Hospital NORTHERN IRELAND CANCER TRIALS CENTRE Introduction
Prognosis for Healthcare: The Future of Medicine Bruce M. Cohen, M.D., Ph.D. Director, Frazier Research Institute, McLean Hospital President and Psychiatrist in Chief Emeritus, McLean Hospital Robertson-Steele
Genetic conditions and insurance What you need to know and what you need to tell About this booklet This information booklet has been produced to provide accessible and impartial information for people
COCIR Contribution to the General Data Protection Regulation 1 and European Parliament LIBE report 2 COCIR calls for a single, clear and workable data protection framework that protects privacy and encourages
Stem cells and motor neurone disease F Stem cell research has fuelled hope of a treatment for a variety of conditions. This information sheet explains what these cells are and includes details of the current
1 ACUTE MYELOID LEUKEMIA (AML), ALSO KNOWN AS ACUTE MYELOGENOUS LEUKEMIA WHAT IS CANCER? The body is made up of hundreds of millions of living cells. Normal body cells grow, divide, and die in an orderly
U.K. Familial Ovarian Cancer Screening Study (UK FOCSS) Phase 2 Patient Information Sheet 1. Invitation You are being invited to take part in a research study. Before you decide it is important for you
Published on ScienceNordic (http://sciencenordic.com) Home > Printer-friendly PDF > Printer-friendly PDF Immune cells from healthy people pulverise cancer Health HealthCancer research immune system
Skin cancer Patient information What is cancer? The human body is made up of billions of cells. In healthy people, cells grow, divide and die. New cells constantly replace old ones in an orderly way. This
Severe Combined Immune Deficiency (SCID) ASCIA EDUCATION RESOURCES (AER) PATIENT INFORMATION Severe combined immune deficiency (SCID) is the most serious form of primary immune deficiency and is usually
N.B Unofficial translation, legally binding only in Finnish and Swedish MINISTRY OF SOCIAL AFFAIRS AND HEALTH, FINLAND No. 101/2001 Act on the Medical Use of Human Organs, Tissues and Cells (Amendments
National Poll: Clinical Research June 2013 Results of a New Public Opinion Poll National Poll on Clinical Research The National Poll on Clinical Research was conducted online in May 2013 by Zogby Analytics
REAL-LIFE BIOINSURANCE WELCOME TO ACCELLERATE AN INVESTMENT LIKE NO OTHER Your clients trust your skills and expertise to guide them to the best products to plan for a secure future. This is exactly why
Methods for Promoting Public Dialogue on the Use of Residual Newborn Screening Samples for Research Rebecca A. Anderson, BS, GeneSIS Center, Department of Pediatrics, University of Utah, firstname.lastname@example.org
EURORDIS Position Paper on Centres of Expertise and European Reference Networks for Rare Diseases EURORDIS - the European Organisation for Rare Diseases represents 310 rare disease organisations from 34
The Liver and Alpha-1 Antitrypsin Deficiency (Alpha-1) 1 ALPHA-1 FOUNDATION The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of people
National Research Ethics Service Does my project require review by a Research Ethics Committee? This algorithm is designed to assist researchers, sponsors and R&D offices in determining whether a project
ADULT - FEB 15 Office use only Staff initials Date ID seen Welcome to Wokingham Medical Centre Thank you for completing this registration form. When registering in person at the surgery please supply two
Patient Handbook on Stem Cell Therapies Appendix I of the Guidelines for the Clinical Translation of Stem Cells www.isscr.org 2008, International Society for Stem Cell Research 2 Introduction We have all
Acute Myeloid Leukemia Introduction Leukemia is cancer of the white blood cells. The increased number of these cells leads to overcrowding of healthy blood cells. As a result, the healthy cells are not
6 Genetic testing The difference diagnostics can make The British In Vitro Diagnostics Association Genetic INTRODUCTION testing The Department of Health published Our Inheritance, Our Future - Realising
Human Research Protection Program University of California, San Diego ISSUES ON DNA AND INFORMED CONSENT Regulatory changes will occur for investigators studying human DNA The recent acceleration and widening
What is a Stem Cell Transplantation? Guest Expert: Stuart, MD Associate Professor, Medical Oncology www.wnpr.org www.yalecancercenter.org Welcome to Yale Cancer Center Answers with Drs. Ed and Ken. I am
Digital Health: Catapulting Personalised Medicine Forward STRATIFIED MEDICINE CRUK Stratified Medicine Initiative Somatic mutation testing for prediction of treatment response in patients with solid tumours:
Insight Driven Health UK Patients with Chronic Conditions Believe the Ability to Access Electronic Medical Records Outweighs Concern of Privacy Invasion Accenture s research shows patients with chronic
Healthcare Coalition on Data Protection Recommendations and joint statement supporting citizens interests in the benefits of data driven healthcare in a secure environment Representing leading actors in
Saving healthcare costs by implementing new genetic risk tests for early detection of cancer and prevention of cardiovascular diseases Jeff Gulcher, MD PhD Chief Scientific Officer and co-founder decode
Prostate Cancer Screening A Decision Guide for African Americans This booklet was developed by the U.S. Department of Health and Human Services, Centers for Disease Control and Prevention (CDC). Published
WMDA Policy Statement for the Utility of Autologous or Family Cord Blood Unit Storage (This policy statement has been approved and adopted by the WMDA board on the 25 th of May 2006) The Cord Blood Registries
Genome Sequencing 1. Health Care and the Human Genome: There is an interesting worry in the vicinity of the genetic engineering debate: How will the ever-lowering costs of sequencing DNA affect the health
65 Chapter 7 Insurance Introduction 7.1 The subject of genetic screening in relation to insurance is not new. In 1935 R A Fisher addressed the International Congress of Life Assurance Medicine on the topic,
Anaemia Patient information What is anaemia? Anaemia is the result of either not having enough red cells to take oxygen around the body, or having faulty red cells that are unable to carry enough oxygen.
Stem cells and motor neurone disease F Stem cell research has fuelled hope of a treatment for a variety of conditions. This information sheet explains what these cells are and how they may be used to create
17 January 2012 Annual Conference of the Icelandic Medical Association New strategies in the field of rare diseases: a comprehensive international approach Runolfur Palsson Rare diseases In Europe, a disease
SEARCHING FOR A BONE MARROW DONOR Angela received a bone marrow transplant from an unrelated donor to treat her non-hodgkin s lymphoma. INFORMATION FOR PATIENTS AND THEIR FAMILIES For patients who need
Genes direct: Ensuring the effective oversight of genetic tests supplied directly to the public (A report by the Human Genetics Commission, March 2003) SUMMARY: Below is a five-page summary of the UK Human
Haematological cancers: improving outcomes Consultation on draft scope Stakeholder comments table 14/04/15 to 30/04/15 ID Stakeholder Page 3 Roche General General Specific consideration should be given
General Information about Donating Blood Stem Cells This document contains general information about joining the national Registry and donating blood stem cells. You could be the Questions & Answers Paul
Multiple Myeloma Introduction Multiple myeloma is a type of cancer that affects white blood cells. Each year, thousands of people find out that they have multiple myeloma. This reference summary will help
Institutional Review Board Collection and/or Study of Human Specimens Policy APPLICABILITY These guidelines apply to: 1. De-Identified, coded, and identified specimens. 2. Existing and prospectively collected
P5_TA(2003)0270 Breast cancer European Parliament resolution on breast cancer in the European Union (2002/2279(INI)) The European Parliament, having regard to Article 152 of the EC Treaty as amended by
Clinical trials For anyone affected by blood cancer bloodwise.org.uk Patient information A note about this booklet This booklet has been produced by Bloodwise, the new name for Leukaemia & Lymphoma Research.
WMDA Policy Statement on the Utility of Autologous or Family Cord Blood Unit Storage The WMDA Board adopted this policy on 25 th of May 2006. Policy updated _April 2011 The Cord Blood Working Group and
tem ells /background /information Stem cell research Copyright 2007 MRC Centre for Regenerative Medicine, Institute for Stem Cell Research /02 /information Table of contents Page 01. What are stem cells?
Cord Blood Program Northwest Tissue Center/Puget Sound Blood Center 921 Terry Avenue Seattle, WA 98104 (206) 292-1896 Swedish Medical Center 747 Broadway Seattle, WA 98122 (206) 386-6000 CONSENT FORM Cord
Web Quest Abstract Students explore the Using Family History to Improve Your Health module on the Genetic Science Learning Center website to complete a web quest. Learning Objectives Chronic diseases such
NHS Blood and Transplant Policies and Procedures Information Charter [POL13] 2 Policy Reference Title Approved by This document replaces version issued June 2008 [POL13] NHSBT Information Charter Information
Am I an Alpha-1 Carrier? 1 ALPHA-1 FOUNDATION The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of people affected by Alpha-1 worldwide.
Presented by James Clagett, PhD., Chief Science Officer - The Best Keep Secret in Regenerative Medicine Corporate Headquarters Virginia Beach, VA Who is? helps save lives and restore health for thousands
Understanding Clinical Trials The UK Clinical Research Collaboration (UKCRC) is a partnership of organisations working to establish the UK as a world leader in clinical research, by harnessing the power
What is Cancer? Normal Growth The human body is made up of many millions of tiny building blocks called cells. Each organ of the body (eg. brain, liver, muscle) contains its own special types of cells,
Bone Marrow (Stem Cell) Transplant for Sickle Cell Disease Bone Marrow (Stem Cell) Transplant for Sickle Cell Disease 1 Produced by St. Jude Children s Research Hospital Departments of Hematology, Patient
Where World-Class Expertise and Genuine Compassion Come Together 0011000110100111100110111100000101010011000101100010111000010010000100010000100001011110101010101111000 000010111000101110011000110100111100110111100000101010011000101100010111000010010000100010000100