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Scientists call for moratorium on clinical use of human germline editing

BMJ 2015; 351 doi: https://doi.org/10.1136/bmj.h6603 (Published 07 December 2015) Cite this as: BMJ 2015;351:h6603

Re: Scientists call for moratorium on clinical use of human germline editing: A deja vu of Ethical Caveat!

Scientists call for moratorium on clinical use of human germ line editing: A déjà vu of Ethical Caveat!

NEED FOR ETHICS IN GENETICS

Dr Michael McCarthy summed up very well the concerns of the international group of scientists regarding interference with the human genome [1]. Ethics is not a branch of Science but when it comes to Human Genetics responsible scientists like Sir David Weatherall FRS [2] and Professor George Fraser [3] always introduce Ethics in their Human Genetics textbooks. I considered it a privilege to have been invited alongside Sir David to present papers at the very “First International Symposium on the Role of Recombinant DNA in Genetics” [4, 5] some 30 years ago in Chania, Crete, Greece when the organisers recognised the real place of Ethics in genetic programmes.

Just 14 years later in September 1999 I happened to be the only person from Black Africa invited with 24 others from the rest of the world by Lake Superior State University, Sault Sainte Marie, MI USA to take part in the first ever Symposium on the Human Genome Diversity Project HGDP [6 7]. The purpose of that Symposium was to debate from each individual’s perspective Professor David Resnick’s essay “The Human Genome Diversity Project: Ethical Problems and Solutions” [8].

I represented Black Africa, emphasizing what worried us Africans about the project [7], but to my utter surprise more than half of the contributors (who were neither African nor African American) shared my concerns [6] regarding what was then presented (like now [1]) not only as a genomic breakthrough we had all been waiting for, but also as a tool to develop (in BMJ’s Jacqui Wise’s words in connection with another genomic exercise) “new strategies for diagnosing, treating, and preventing diseases” [9]. True, the eminent scientists distinguished between somatic cell line application for curing say Sickle Cell Disease [10] though with 1 in 4 of Africans carrying a beta-globin gene variant this is a tall order – and using the technique on the germ line where changes go on for ever and where this moratorium call has been expressed.

SINISTER DÉJÀ VU

In the Human Genome Diversity Project (HGDP) Symposium in 1999 Professor Frank C Dukepoo used the identical “Scientists call for moratorium phrase” that Dr Michael McCarthy said the present scientists have also used [1]. After stating that the “The potential for ‘scientific racism’ is high and potentially explosive” Professor Dukepoo [11] went on to say this: “When recombinant DNA technology became a reality, eleven of the leading scientists in the new field of molecular biology published an open letter on July 26, 1974, asking their colleagues to initiate a self-imposed moratorium on conducting high-risk DNA recombinant experiments (Rifkin 1998) [12]. In the end, the moratorium was lifted as moral responsibility was trampled by financial interests. Will history repeat itself?” [11]

HOPEFUL SIGNS AS CHAIRMAN IS NOBEL LAUREATE DAVID BALTIMORE

Scientific brilliance does not always have an ethical dimension so it is refreshing to know that Professor David Baltimore, the 1975 Nobel Prize winner in Physiology or Medicine [13], is the Chair of the present International Summit on Human Gene Editing [1] and adds his weight to the moratorium plea. We Africans fear scientific racism more than any other people. Even seemingly harmless programmes are viewed with suspicion. Several white people voice our concerns too. Joseph S Alper and Jon Beckwith from the University of Massachusetts, Boston and Harvard University mention racism in genomic programmes and “the fear that entire groups of people may be adversely affected” [14].

LACK OF TRUST OF VISITING RESEARCHERS IS BASED ON HINDSIGHT

I have spelt out detailed “hind sight” reasons related to scientific misdemeanour why we are extremely suspicious of much research planned abroad purporting to “help Africans”. Fortunately, many Africans trained in the best universities in the world are beginning to scrutinise these projects and advising their governments to reject the “research gifts” with the slogan “Equo ne credite, Teucri! Quidquid id est, timeo Danaos et dona ferentes” (Do not trust the horse, Trojans! Whatever it is, I fear the Greeks even when they bring gifts) [15]. Those keen to know what these “hind sight” reasons are why most (not all) Ghanaian intellectuals reject things like the Ebola Virus Vaccine research planned from abroad may turn to “facts” (not Conspiracy Theories) in several publications [7 16-24]. This last reference ‘24’ expresses disbelief that a Global Genome Sequencing Programme was being done ANONYMOUSLY and had involved tribes in Kenya and Nigeria [24]. That research, just like this germ cell editing one was being presented as a breakthrough.

SCIENTISTS ARE NOT EQUAL IN THEIR INTERPRETATION OF ETHICS

Lord Ritchie-Calder in The Lancet divides scientists into two groups: “While one group of scientists is devoting its energies to prevent diseases, another is devising man-made epidemics” and he called this ”Public Health in reverse”. [25], Professor George Fraser has also translated Muller Berno-Hill’s book “Murderous Science” from German into English [26]. A moratorium on dangerous research is all well and good but how do we identify which of the scientists involved in the work have different agenda? There really is no easy answer to this “moratorium” business. Scientists can do what they like when the Law lags behind scientific advance. But what if one country’s legal system allows “scientific sons of Belial” as I have called them [18] to flourish while other countries forbid them? The latest is genetically creating mosquitoes through the Crispr gene editing method to abolish Malaria [27], which one scientist may consider marvellous while another may call it anathema, But the fear of “purposefully altering human evolution” [1 10] by this exercise is unfounded. It cannot happen.

Conflict of interest: None declared.

Felix I D Konotey-Ahulu FGA MD(Lond) FRCP(Lond) DTMH(L’pool) FGCP FTWAS
Consultant Physician Genetic Counsellor in Sickle Cell & Other Haemoglobinopathies, Phoenix Hospital Group, 9 Harley St., London W1G 9AL

felix@konotey-ahulu.com Twitter@profkonoteyahul

1 McCarthy Michael. Scientists call for moratorium on clinical use of human germ line editing. BMJ 2015; 351:h6603

2 Weatherall DJ. Ethical issues and related problems arising from the application of the new genetics to clinical practice. Chapter 12 in The New Genetics and Clinical Practice. Oxford Medical Publications (Third Edition) 1991, pp 347-368.

3 Fraser George R. Human Genetics today: hopes and risks. In FIFTY YEARS OF HUMAN GENETICS: A Festschrift and liber amicorum to celebrate the life and work of GEORGE ROBERT FRASER, Edited by Oliver Mayo and Carolyn Leach. Wakefield Press, 2007, pages 299-308. 1 The Parade West, Kent Town, South Australia 5067 www.wakefieldpress.com.au

4 Wainscoat JC, Thein SL, Hill AVS, Flint J, Old JM, Clegg JB, Weatherall DJ, Sampietro M, Fiorelli G, Serjeant GR, Boyce A. Beta-globin gene haplotypes: clinical and anthropological studies. In The First International Symposium on the Role of Recombinant DNA in Genetics. May 13-16 1985, Chania, Crete, Greece. Edited D Loukopoulos & Teplitz RL, pages 37-43.

5 Konotey-Ahulu FID. Missing the wood for one genetic tree? In The First International Symposium on the Role of Recombinant DNA in Genetics. May 13-16 1985, Chania, Crete, Greece. Edited D Loukopoulos & Teplitz RL, pages 105-116.

6 Symposium on The Human Genome Diversity Project (HGDP). POLITICS AND THE LIFE SCIENCES, September 1999, Volume 18(2) Pages 179-364.

7 Konotey-Ahulu FID. The Human Genome Diversity Project: Cogitations of an African Native. In POLITICS AND THE LIFE SCIENCES, September 1999, Vol. 18(2), pp 317-322.

8 Resnik DB. The Human Genome Diversity Project: Ethical Problems and Solutions. Politics and The Life Sciences; 18: 15-23.

9 Wise Jacqui. Consortium hopes to sequence genome of 1000 volunteers. BMJ 2008; 336; 237(2 February)

10 National Academies of Sciences, Engineering, and Medicine. On Human gene editing: international summit statements. 3 Dec 2015
www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=12032015a

11 Dukepoo Frank C. It’s more than the Human Genome Diversity Project. In POLITICS AND THE LIFE SCIENCES, September 1999, Vol 18(2), pp 293-297.

12 Rifkin J. The Biotech Century. New York, Penguin Putman, 1998.

13 Baltimore David. www.nobelprize.org>baltimore-bio

14 Alper Joseph S, Beckwith Jon. Racism: A Central Problem for the Human Genome Diversity Project. In POLITICS AND THE LIFE SCIENCES, Sept 1999, Vol 18(2), pp 285-288.

15 Virgil, Aenid, ii.48 (70-19 BC) The Trojan Horse.

16 Zuckerman S. Pride and Prejudice in Science. Aerospace Medicine 1974; 45: 638-47 (Also republished in Ghana Medical Journal 1975; 14: 52-60)

17 Fassin Didier, Schneider Helen. The politics of AIDS in South Africa: beyond the controversies. BMJ 2003; 326: 295-97.

18 Konotey-Ahulu FID. AIDS in Africa. Wake up call and need for paradigm shift. BMJ Rapid Response (3 April 2003) to Didier Fassin and Helen Schneider on The Politics of AIDS in South Africa, beyond the controversies BMJ 2003; 326: 295-497 http://bit.ly/1EB71LS

19 Konotey-Ahulu FID. AIDS in Africa: Misinformation and Disinformation. Lancet 1987; 2(8552): 206-208 July 25.

20 Arie Sophie. Ebola: A game changer for vaccines, or a scare that will soon be forgotten? BMJ 2015; 350: h1938

21 Konotey-Ahulu FID. Ebola and Ethics: “Are vaccine trials going on somewhere in Africa?” BMJ Rapid Response June 2 2015 www.bmj.com/content/350/bmj.h2105/rr-5

22 Konotey-Ahulu FID. Ebola and Ethics: Ghana Academy of Arts & Sciences and Ghana Parliament Suspend Ebola Vaccine Trials www.bmj.com/content/350/bmj.h2105/rr-7 BMJ Rapid Response 14 June 2015.

23 Konotey-Ahulu FID. Ebola viewed through HIV/AIDS spectacles – What Africans really think. BMJ Rapid Response .August 7 2015 www.bmj.com/351/bmj.h4142/rr-0 .

24 Konotey-Ahulu FID. Sequencing genome of 1000 volunteers: Why do this anonymously? African Journal of Health Sciences 2011; 18: 37-52 www.ajhsjournal.or.ke/admin/current/914vpjkSBOS.pdf

25 Ritchie-Calder Lord. Annotations: The Biological Bomb. Lancet 1968; 1: 465 March 20.

26 Muller-Hill Berno. Murderous Science. Elimination by Scientific Selection of Jews, Gypsies, and Others – Germany 1933-1945 [Translated from German by G R Fraser] Oxford, Oxford University Press, 1988.

27 United Press International IRVINE, California November 14 2015, Scientists at the University of California campuses in Irvine and San Diego inserted a DNA segment into the Anopheles stephensi mosquito using the Crispr gene editing method. Crispr allows access to cell nucleus to change DNA using guide RNA targeted to highly specific spots marked for change. [Proceedings of the National Academy of Sciences of America doi.10.1073/pnas.152107712 by Gantz VM, Jasinskiene N, Talarenkova O, Fazekas A, Maclas VM, Bier E, James AA].

NB: As the call for Moratorium chaired by Professor David Baltimore implies this Gene Drive Technology to modify organisms can be highly dangerous and is not approved of by many scientists. Felix I D Konotey-Ahulu

Competing interests: No competing interests

16 December 2015
Felix I D Konotey-Ahulu
Kwegyir Aggrey Distinguished Profesor of Human Genetics University of Cape Coast, Ghana
Consultant Physician Genetic Counsellor in Sickle Cell & Other Haemoglobinopathies
Phoenix Hospital Group, 9 Harley Street, London W1G 9AL
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