Back From the Dead: DNA of Deceased to Boost Danish Research

A group of Danish researchers are investigating the possibility of gathering DNA material from the deceased in order to create a genome archive of the dead, as scientists are constantly discovering new genetic variations that could lead to breakthroughs in curing or preventing diseases.

A "biological archive" comprised of the DNA of deceased Danes would give a major boost to discovering cures for illnesses and diseases, Michael Christiansen, chief physician at the State Serum Institute, argues.

"Our ideal aim is to amass DNA from all dead Danes," Christiansen had told the scientific portal Videnskab.dk earlier. "If we started now, over the course of a year, we would have the genomes of 60,000 Danes. In ten years, we would have stockpiled half a million genomes," he said.

"I'm 55, but who says I won't be sitting in a nursing home suffering from Alzheimer's in five years' time?" he questioned rhetorically.

The Danish scientists advocate the creation of a nation-wide necrogenic registry, recording the genomic sequences of all Danish citizens at the time of their death. Danish law would allow these data to be linked to the Danish Civil Registration System, which registers medical history as well as socioeconomic data for all citizens and residents. With the combined data records, researchers could assess the phenotype/genotype association for many diseases that commonly affect the Danish population, enabling large epidemiological studies, the scientists argued in Science Magazine,the peer-reviewed academic journal of the American Association for the Advancement of Science.

"We humans are distinguished from each other through 4 million base DNA pairs, and while one genetic variation leads to illness for some, it doesn't for others. In reality, the conclusions currently being made are uncertain," Christiansen said.

The sheer number of variants in the genome of a population poses problems for evidence-based diagnostics #genomics https://t.co/GeVlvigFaH

— Michael Christiansen (@MIC_CPH) April 4, 2016

​Studies based on the necrogenomics database could therefore provide strong evidence of genetic association, as well as potential drug targets and inform treatment modalities. The database would also offer the evidence necessary to adequately evaluate clinical risks. Furthermore, a family physician, with the consent of the treated or advised patient, could request DNA material found in deceased family members. This information could enable the patient to seek early and preventive treatment, thus avoiding premature death, serious disability or adverse drug reactions.

The necrogenomic studies, however, involves many ethical challenges. While Denmark is a world-class nation when it comes to giving researchers access to DNA material while protecting the anonymity of the source, much can be improved. To address the matter of public consent, an "opt-out" possibility similar to organ donation procedures might allow individuals with reservations to exclude themselves from sampling upon their death, the scientists argue.

In Denmark, a necrogenomics registry can be handled within the framework of the country's legislature on biobanking. If properly administered within the country's cultural, legal and ethical framework, necrogenomics will provide the predictive power necessary to offset the current lack of evidence that plagues genetic testing for many disorders, the scientists maintain.