Ethical Issues In Bioinformatics

Question

[Graslevy]

With sequence data becoming easily accessible and affordable, I can readily think of the ethical issues that may arise. Insuarnce companies may refuse health coverage for a seemingly healthy person because of the likelihood of a genetic disorder, banks may refuse loans if they had access to genetic data etc.

Could you suggest more ethical concerns in bioinformatics..?

[Alex Paciorkowski]

I don't think the issues you mention are really new specific ethical concerns for bioinformatics, but are rather the same issues that have always confronted clinical genetics. The new sequencing technologies do not really change what have been long-standing issues that medical geneticists and genetic counsellors have wrestled with since the beginning of the field.

[Laurent]

The genomes unzipped project is an interesting resource related to impact of direct-to-consumer genetic testing and the ethics-related consequences.

[Graslevy]

Thanks Alex. I was hoping to get some answers that may highlight the computing aspects also. The logistics of having data mined personalised medicine, the influence/role of cloud computing etc.

Answer 1

[Gjain]

Hi,

This paper discusses this topic in good detail: Ethics of Bioinformatics: A Convergence of Bioethics and Computer Ethics

Some other concerns includes (source):

• Should bioinformatics data be included in medical records?
• Preselection of embryos:
  • if fetus has a problem? – you know that your newborn will die soon, should you still let it be born?
• Will groups be evaluated based on their genetic profile? Will populations / cultures / individuals be identified by their genotype, rather than their phenotype (as it is now)? Will this increase / decrease racism/sexism etc?
• Will employers require a specific genotype / gene in employees? Can they request this like a drug test?
• Find the genes for intelligence. Would you want YOUR children to have extra intelligence genes / be positively/negatively selected based on their genotype.

And there are many more concerns. I hope we can find answers of all these questions/concerns in near future. With the advent of personalized genomes and medicines, its not far that these questions will be asked in everyday life.

[Graslevy]

Thanks Gjain. I like the employer-genotype example! Do you think sequence data should be included in medical records..?

[Gjain]

I think this should be a personal choice. If the patient want to include it then yes, otherwise no. A yes may lead to better treatment but on the other hand it may put a dent in your insurance.

Answer 2

[Larry_Parnell]

• Stealing or not referencing the work or code of others.
• Ignoring copyrights and patents and misusing trademarks.
• Ignoring license agreements.
• Misuse of subject/patient data (sequence data/ electronic health records) and ignoring the IRB.

These are important and often overlooked activities, before you get to other issues regarding insurance and such.

[Alex Paciorkowski]

These are definitely specific ethical issues for bioinformatics.

[Micans]

If a programmer is not consciously aware of a specific patent, is this ignorance? There are millions of patents, and it is well established that programmers should not try to sift through them. Any substantial piece of codes is likely to infringe on hundreds of patents. The only ethical issue with patents and programming is that software patents are manifestly unethical. There is nothing specific about the misuse of trademarks of licensing agreements to bioinformatics, and neither is the misappropriation of work.

[Larry_Parnell]

This question need not be interpreted as specific and exclusive to Bioinformatics. I was not assuming that the Bioinformatics scientist works alone, but in collaboration with a legal department, bench scientists, and other professionals. Most institutions have a legal department. Software is not the only entity used in Bioinformatics and so there is the opportunity for a Bioinformatics scientist to infringe on a patent in other ways.

Answer 3

[Pascal]

There is another issue to take into account when one member of a family decides on his/her personal decision to release whole or part of his/her genome in a DB (or opensource as we have seen some months ago in github). The rest of the members of the family are "threaten" by this release of data.

[Madelaine Gogol]

Good point. I think anyone posting their genome publicly under their own name should think hard about this.

[Pascal]

Actually, this points made me think a lot about what is the responsibility an individual has towards his/her family (ascendants and future descendants)!

Answer 4

[Mary]

See this too, thought it was interesting:

Genomics and Privacy: Implications of the New Reality of Closed Data for the Field

Was from a researcher perspective largely, with implications of access to patient data and analysis thereof.

[Graslevy]

Very interesting...thanks!

Answer 5

[Steve Moss]

Companies being able to patent and make profit from gene sequences. I think this is a particularly worrying ethical concern!

For example:

• http://www.sciencemag.org/content/310/5746/239.summary
• http://www.nature.com/news/2011/110405/full/472020a.html
• http://www.nytimes.com/2011/07/30/business/gene-patent-in-cancer-test-upheld-by-appeals-panel.html

Answer 6

[Martin A Hansen]

The ease of falsifying data.

[Graslevy]

Thanks Masha.s there a case to be made for accuracy? For instance, the sequencing errors in the initial Anderson sequence could have led to miscarraige of justice if they affected the D-loop. I just wonder the impact of such mistakes in other instances without a watchdog...

[Istvan Albert]

I don't think it is easier at all - When someone say measures the magnetic properties of a compound they get a simple results file with a curve that is far easier to falsify (all they need to do is move around some points and it has been done http://en.wikipedia.org/wiki/Sch%C3%B6n_scandal). Compare that to generate an sequencing files that, when filtered and mapped produce the output one desires.

[Martin A Hansen]

@Istvan Albert I hope you are right, but it's so darn easy to omit sequences that doesn't fit the hypothesis in e.g. 16S amplicon community analysis. Also, its pretty darn easy to fill gaps in genome assemblies with whatever sequence.

Answer 7

[Amr]

hers a recent documentary on synthetic biology which addresses some really important issues

you need to be in the UK to watch it (or VPN into a uk network - maybe a bit illegal!)

http://www.bbc.co.uk/iplayer/episode/b01b45zh/Horizon_20112012_Playing_God/

also check out Peter Singer's work, he is a famous bioethicist