Newborn blood spots from a small sample of 98 Generation Scotland volunteers were tested to see if they could be used for health research on a national scale. Here's what we found. Every baby born in Scotland since 1965 has a Guthrie card. It contains 4 drops of blood from newborn babies, that are collected a few days after birth from a tiny heel prick. This card also has details about when and where the baby was born. It's a unique record of every baby born in Scotland. So... what if these could be used for research? Our team had this same question. So, we decided to take a look into it. We conducted a study to see if using these blood spots was a good idea. You can read more about the study, currently under review, here: Research feasibility and ethics in Scottish new-born blood spot archive We selected 30 boxes of Guthrie cards, with blood spots and data from 98 of our volunteers. A team in the NHS Greater Glasgow & Clyde Biorepository reviewed the cards and found there was enough information to link the cards to volunteer health records. They also found there were enough samples to do further blood sample testing. We successfully matched the Guthrie cards to Generation Scotland volunteers. That means could take DNA from spare blood spots and accurately link any results to tests we did in blood samples collected almost 30 years later from our adult volunteers! Take a look at our video below to learn more about Guthrie card research, how it can be used and, most importantly, how we keep the information safe. Alternatively, if you do not wish to watch our video, you can find our FAQs below. What was the aim of the study? NHS Scotland has the largest and longest-standing collection of dried blood spots in the world. There is currently a moratorium on making this archive available for health research. Generation Scotland has posted a study that describes work undertaken for two purposes: To gauge public opinion on whether stored dried blood spots collected at birth might be used for health research, and if so under what conditions. To conduct a feasibility study on practical and technical issues, approved by the Chief Medical Officer for Scotland. You can read and download the study here. Please note that the study is currently undergoing peer review: Research feasibility and ethics in Scottish new-born blood spot archive In the meantime, we have provided brief answers to some key FAQs relevant to the study. What are Guthrie cards? Every baby born in Scotland since 1965 has a Guthrie card. The Guthrie card is an adsorbent piece of special paper on which 4 drops of blood have been collected a few days after birth from a tiny heel prick. The card has details of when and where the baby was born and so is a unique record of every baby born in Scotland. Most countries collect newborn blood spots in the same way as in Scotland. What is special about Scotland is that they have been collected and stored since 1965. About 60,000 babies are born each year in Scotland. There are close to 3 million Guthrie cards in total. Why are blood spots collected at birth? The NHS collects the blood spots because they can then test for evidence of rare inherited diseases. In Scotland the NHS tests for 9 different conditions. These conditions are all serious and life-limiting. All of them can either be treated by adopting a special diet or by starting preventive treatments early. You can find out more here: Scottish Newborn Screen Laboratory Why are Guthrie cards kept? They are kept because it might be important to retest for the condition or test for other conditions as new or improved tests are devised. They are also a unique record of every child born in Scotland that could be valuable for research. Who's responsible for them? The Scottish Guthrie card archive is the responsibility of the Greater Glasgow and Clyde Biorepository, part of NHS Research Scotland. How could they be useful for health research? The technology for analysing dried blood spots has increased enormously in recent years. You could tell if a baby carried a bacterial or viral infection at birth. You could analyse the genetic material for important risk factors that might only appear later in life, such as heart disease or cancer. What do people think about allowing for dried blood spots to be used for research? We have conducted a Citizens’ Jury in which members of the public were asked to consider the evidence for and against using the Guthrie card archive for research. The Jury were in strong support for research, with conditions. They said that approval should only be given for research that was in the public interest and for public benefit. They also said that research proposals must first be reviewed, approved and overseen by an independent regulatory body. How did you get permission for the study? We took our findings from the Citizens’ Jury to the Scottish Government Chief Scientist Office. The Chief Medical Officer agreed that a feasibility study should be undertaken, led by Generation Scotland. What did you find? The Guthrie card archive is stored in a secure vault with access restricted to NHS staff. The boxes of older cards have all been kept but have not been catalogued or re-examined since being stored away. We selected 30 boxes that covered the period 1965-1990. NHS staff found that most cards contained sufficient written information on them to link the birth details to other routine NHS health records. They also found that most cards still had enough material left so that further tests could be made. We were able to match up Guthrie cards to Generation Scotland volunteers. We could extract DNA from spare blood spots and accurately link the test results to tests that we had done in blood samples collected almost 30 years later from our adult volunteers. What happens next? We have shared the study findings with the Scottish Government Chief Scientist Office. They are planning a Public Consultation. They will then decide if research access should be allowed and if so, how that should be overseen and regulated. This article was published on 2024-05-06
