HeLa cells have been vital to making groundbreaking research
in science for the past six decades. Many Scientists made million passages from
them and shipped them from one place to another but did not put too much
thought into where they originally established. Rebecca Skloot gave the cells a
life and a history through her book “The immortal Life of Henrietta lacks”. The
book dealt not just with the origin of the cells but interwove it with scientific
discovery, faith healing and racial issues. This book brought to light many
ethical issues that were neglected decades ago. Skloot talks about how the
Lackses were kept in the dark about the cells, how important and beneficial
they were in moving science forward. This book published a few years ago has
gained some more importance this year after the HeLa genome was sequenced.
A little bit of
Background…
Early this year, in mid March Lars
Steinmetz and his group
published the sequence of HeLa genome in G3: Genes, Genomes and Genetics
online. The study was comparing the genome of HeLa cells to that of normal
tissue. This publication sparked a storm of ethical controversies that forced
them withdraw the publication. This is also the first time a genome has been
withdrawn from public access. The family stated that the genome sequence is
private family information and it should not be published without consent. EMBL
describes the genome to be chaotic, complex and fractured representative more
of a cancer genome than of the family itself. There seems to be more fire on
the grill since consent was not received before establishing the cell line
itself.
The ethical conundrum
The argument that Skloot points out in her NYT
essay is that since the genome was published long after Henrietta’s time,
consent should have been received from her family. While we all agree that
patient’s consent is top priority while using samples or data for extending continuing
research, having the family consent for them is a whole different ball game. It
spurs questions like “Do my unborn children have the right to ban me from
making my genome sequence open access?” It is an ethical conundrum indeed. It
is easy to argue that one’s genome sequence is one’s own private information and
hence the individual’s decision to make it as available as possible but it is
difficult to ignore the information the data would provide once a SNP calling
or comparative mapping is performed.
The awareness people from a non-scientific background have
on human genome sequencing is limited. Having information available online
makes it sound like facebook only with 100x more coverage. This is not true. It
is important to remember that most of the analysis that comes out of human
genome sequencing is a “prediction” with a percentage or a probability number
associated with it until it manifests into a phenotype. But it is also
important to remember the good that has come out from making sequences publicly
available. Publicizing genomes may not be the first aspect that we think about
when it comes to our own sequence, but on the flip side when there is an issue
for example a rare genetic disease, it opens up more resources and the chance
of a remedy when data is available to other researchers.
The can of worms that have been opened because of the HeLa
Genome will hopefully help establishing policies regarding sequencing and
publishing of human sequences. As we move a step further into personalized
medicine, it is important to have this in place but in doing so not forget the
direction we want to personal genomics to take or how beneficial it can turn
out to be.
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