Research Study Participant Information

SUMMARY

This document provides background information on the research carried out by myDNA.global. We are asking for your voluntary participation in a DNA collection that is being created by myDNA.global for research purposes – to help understand the genetic history of the British Isles and Ireland. Whether you take part or not won’t affect the service you receive from myDNA.global. Before you decide, it is important for you to understand why the research is being done, what it will involve, the risks and benefits. This process is known as 'Informed consent'. Please take time to read the following information carefully and discuss it with friends or relatives if you wish. Ask if there is anything that is not clear or if you would like more information.

WHY IS THIS STUDY BEING DONE?

We are creating this genetic data bank to improve our understanding of the history of the people of Britain and Ireland. There are three main ways of learning about history using genetics.

Y CHROMOSOME

Men carry a piece of DNA called the Y chromosome which is inherited from father to son to grandson down the generations. There are many DNA markers carried together on the Y chromosome which make it possible to identify a large number of groups of related lineages. These groups are found at different frequencies in different places and it is possible in some cases to work out the migration route taken by the ancestors of the group. This information about paternal ancestry can be quite specific, as some groups are only found in a small area, for instance Ireland, but others are more widespread. Certain lineages can mark descent from particular historical figures (e.g. the Royal Stewarts) or peoples, for instance Norse Vikings. Only men can be included in Y chromosome research which provides information on male-line history. This part of the research aims to discover more Y chromosome markers and to better understand where they are found, so that we can improve their interpretation, using for instance the information you provide on father’s father’s birthplace. A second element of the Y chromosome studies is to focus on surnames. Like Y chromosomes, they are inherited from father to son, and so there is often a link between a Y chromosome genetic signature and a surname. We aim to investigate these links to better understand surname history. If you are male, your surname will be linked to your genetic data to allow this.

MTDNA

A different piece of DNA is inherited down the female line, from grandmother to mother to daughter, and called mitochondrial DNA or mtDNA. mtDNA is carried by men and women, but men do not pass it on to their children, so it records only the history of women. mtDNA also carries a large number of DNA variants which allow many groups of related lineages to be identified. As with the Y chromosome, mtDNA groups are found at different frequencies in different parts of the world. The mtDNA research also aims to find new markers and understand better where new and old markers are found, this time using information on mother’s mother’s birthplaces.

AUTOSOMES

We will also analyse the genetic markers found in the rest of your DNA, which is inherited from both your parents (called the autosomes, which make up ~95% of your DNA). We use a ‘gene chip’ to read many hundred thousand markers: this is called a genome scan. Analysing all these markers together is a very powerful way to look at how populations and individuals are related to one another. Analyses can identify small proportions of say Native American ancestry in a European genetic background. Some genetic variants on the autosomes influence traits such as hair or eye colour and we also analyse these. The aims of our research are to identify markers which allow us to look in more detail at overall ancestry, for instance within Europe and eventually within the British Isles and Ireland, as well as to identify further trait markers, such as new red-head variants.

HOW WILL THE STUDY BE CARRIED OUT?

We are inviting all customers of myDNA.global to take part in this study. If you decide to participate, we will include your DNA, genetic results and any ancestry-related self-reported information already provided to myDNA.global in a research database, there is nothing extra that you need to do. Your identifiable data such as name and address will not be included in this database. We may test further markers on your DNA in the future but you will not need to give a new sample. In order to keep our records complete and up to date, members of our research team may wish to contact you via telephone, letter or email in the future. We may also conduct surveys through our website. You are free to take part in some, all, or none of these surveys. In order to discover new markers we may in the future send your DNA to a reputable genome sequencing centre, which could be abroad. Should we wish to send your DNA to another lab, it will be sent in a coded form. In order to get a better idea of where certain markers come from we may in the future wish to trace parts of your family tree using records of birth, marriage and death. Newly discovered markers may be used in future ancestry tests and marker frequencies used to improve products. Your DNA will be stored securely for the purpose of future genetic research projects.

CONFIDENTIALITY:

Samples and genetic data will be studied in coded format - your name, address and other identifiable details will be held separately from your ID code which will be attached to your genetic information. Therefore, the genetic information will not be in a form by which you could be identified. The results of our study, including data generated, may be shared with other scientists and published at a later date, but your name will not appear in any such publications. You will not receive any individual results from this study.

WHAT ARE THE RISKS AND BENEFITS OF PARTICIPATING?

As with any study involving genetic information the risk of data loss or misplacement is present. We will take utmost precautions to avoid such complications. Although we do not routinely investigate genetic variants known to be related to health, genetic tests have the potential to identify a genetic change that could be important in your lifestyle decisions. For example sequencing may discover a variant which increases the risk of developing a disease. We do not analyse the data in this way, but if a genetic variant comes to our attention that we deem to be clinically significant, we will contact you offering you the result together with genetic counselling. The main benefit of taking part is the opportunity to contribute to genetic ancestry research and to increase the understanding of genetic history; you will not benefit financially. We intend to publish the results in the scientific literature, and we are also active in science communication where we feedback our general findings to the public.

WHO IS ORGANISING AND FUNDING THIS STUDY?

The study is being run by myDNA.global. The person responsible for the study is Dr Tom Burr. The study is funded by myDNA.global, a ‘for profit’ commercial enterprise.

YOUR RESPONSIBILITY:

It is your responsibility to ensure you understand the information before you agree or disagree to take part in this study. You should be clear about the potential risks and benefits associated with taking part. You don’t have to take part in the study. If you decide not to take part you do not have to give a reason. Similarly, you can change your mind and withdraw from the study at any time without giving reasons. This Participant Information Sheet can be printed out to keep.

If you have further questions please contact: support@myDNA.global or call on 0345 872 7634