Relationship quality equals bandwidth – a love letter to my wife

Transatlanticism. This is the 165th post on this blog. My wife Katie read every single one of them, correcting my Denglish phrases, adding Oxford commas, and giving me valuable feedback from her unique perspective as a certified genetic counselor with a research background in epilepsy genetics. Today is Katie’s birthday, and I would like to dedicate this post to her by saying thank you and I love you. Katie and I met at the Epilepsy Research Centre in Melbourne, Australia. In 2007, while driving around Lake Alexandrina in South Australia on a road trip, we listened to Transatlanticism by Death Cab for Cutie. This song became emblematic of our relationship for the years to come while we maintained a long-distance relationship between the US (Katie’s Masters in genetic counseling) and Germany (my residency in Kiel). In 2009, after two years of living on different continents, we were finally reunited. If you were to ask me about the main lesson I took away from this time apart, I would sum this up in a single sentence: “Relationship quality equals bandwidth”. This post is a reflection on why quality matters in the communication between geographically separated individuals. It won’t be a purely romantic post. That’s not my style, and that’s ok with Katie – she has corrected this post, as well. Continue reading

The Biobank Dilemma

Killing two birds with one stone. I am currently preparing for a presentation for the Scientific Advisory Board of our local biobank network P2N and I thought that I wanted to share a few thoughts on biobanking and sample collection for epilepsy genetics that have troubled me for a while. Continue reading

Charting a bioethical gray zone: genotype-driven research recruitment

The need for re-contact. Genotype-driven research recruitment refers to the inclusion of research participants in future genetic studies based on the findings from previous studies.  For example, deep sequencing efforts within the EuroEPINOMICS Consortium may generate potentially interesting novel variants that warrant further investigation.  In some cases, it might be necessary to obtain more phenotypic information, in other cases, segregation in the family might be of interest.  Since many variants are rare in the general population, genotype-driven approaches are particularly attractive, i.e. research participants are selected based on genetic findings.  This so-called “bottom up” approach allows for targeted studies without the time-consuming and expensive step of re-screening large patient cohorts.  In the future, genotype-driven research efforts will likely become increasingly common, since it is unlikely that large-scale genomic studies alone will be able to sufficiently characterize rare genetic variants.  However, approaching patients based on genetic research data raises important questions. Continue reading

Next Generation Ethics: Struggling with petabyte consent forms

Everyone involved in research with human subjects knows about the importance of informed consent.  The purpose of informed consent is to promote educated decision-making and voluntary participation in research.  Whether or not you’re aware of the fundamental ethical principles underlying the process (patient autonomy and protection from harm, for those keeping score at home), you at least know that you have to get the study participant to sign the form. Continue reading